help for single mum with autistic teenager

Hi Folks

I am a newbie to any forums, I have just got to the stage I need advice, and don't know where to turn.  Please excuse any mistakes  I might make.  

My daughter was diagnosed at about 15 as being on the ASD spectrum.  Since then we have had no official help.  She can be very tricky but she is also a lovely girl that I am very proud of.  She is now 19.  Many people don't really realise she is on the spectrum as she is so good at masking when out and about, and anyone she meets says what a lovely girl she is.  She had massive burn out in 2020/2021 - during A' levels which resulted in an Functional Neurological Diagnosis.  I think this was connected to the stress of being at school, as it seems to have cleared up.  She did get in to uni, but has interrupted during her second year for several reasons.   Sorry - just a bit of background!  She now living at home with no real aim. She has got a part time join lined up for the summer and some sailing on Tall Ships - her obsession. 

She can be really lovely, but sometime she can be horrid/judgmental and generally hard to live with.  This is only ever directed at me and her younger sister (who is 18)  It behaves as if she  she is right all the time - whatever she had done, and can not see why we are upset or why we think her actions are unfair.  For example last night - lovely - joking about videos she was watching, including me in the joke etc.  This morning - horrid.  Shouty, rude, expecting us to do everything for her, unwilling to help at all, left the house without saying goodbye (which I have always made a point doing)  She isn't really doing much with her time at the moment - working 1 day a week in a garden by herself, seeing 1 friend occasionally.  Hates public transport, doesn't like driving the car....so wont leave the house... won't walk from the house as she has hang ups as it was the way to school.  

My problem is that I sometimes get angry with her behaviour.  I hate that I do it, but seem to be at the end of my tether most of the time at the moment. And I don't know how to help/make things better.  When ever I try to talk to her about the situation, she says 'yes' then carries on as before.  We live in a small house, she doesn't clear up after herself, she will often sleep until midday then do nothing, but expect me and her sister to make tea/shop/do the washing etc - which she just watches videos.  ( I work full time and have a slipped disc, my younger daughter is in the middle of A'levels and has a 2 part time jobs) She expects us to change our clothes as soon as we walk into the house and will just shout about it until we do, she will hold a grudge.  She will grudgingly help on her own terms in her own time, then expect something in return - it is always a bartering system.

Sorry for the rant - I really do love her but I find it harder and harder to like her at the moment and I would just like some advice about how to handle the sitiuation - to make it nicer for all of us, as I don't think she is happy either.

Thank you in advance.  K

Parents
  • I'm sorry to hear - this all sounds frustrating. You've not gotten the help you need to be able to help her it seems.

    I'd like to point out a few things that are happening just to help with perspective. Humans are like plants. Put them in the right environment and they thrive. In the wrong one and they will have trouble growing. Modern society is a mismatch for Autistic kids and adults. Schools and the education system don't teach in ways we would thrive, so it stunts our growth. If the school system was a little more like it used to be 100 years ago, it would be different. We would thrive in situations where Latin was taught and weeks were heavy focused on just a few subjects without interruption except a lunch break. In other words, focused learning with few breaks structured with older and younger kids. 

    Since we've been 'planted' like a banana tree in the arctic, society may find we don't begin to mature until 30ish. Until then we can feel useless, ghostly, distracted, pointless, out of place, and without purpose: like a little iceberg. We still need adults to work with us, to show not tell us and to spell out in detail from the fundamental ethics up how and why social operations exist like they do. How to garner a positive response and how that function creates a fluidity for everyone. There's a fun little book out I feel every teenager would benefit from called F^çk*ng Good Manners by Simon Griffin. If you're not too bothered by the authors ironic and sarcastic use of the the word. But it could help! In the Victorian Era, pamphlets were distributed to help civilise everyone giving them clear and detailed instructions of what was to be expected. And if I'm honest, the world expects Middle Class manners from every class. However, if you want to help her better comprehend how a good society functions, I'd pick up Erich Fromm's The Art of Loving and Revolution of Hope - and then read through them together over the next year. Honestly, I didn't have a decent vocabulary or an ability to access it decently enough until mid 30s. And even then it was difficult. Reading helped greatly. 

    At this age, there will probably be too much in her head to recollect very surface-level social mannerisms which non-autistics appreciate. Leaving without saying goodbye is typical for us and in a room full of autistics, we might all do this, go home with happy memories and look forward to seeing each other again. Hellos and Goodbyes are nominal compared to Depth of interaction and intimate friendships. Due to having a Different Salience Network - we feel everything (emotions and things like smell/taste) intensely. When young it's overwhelming. Even at 40+ I feel a demanded conscious effort with every detail to attempt to not respond inappropriately But goodness. Public loos are horrid smelling, I wear ear plugs as the dryers are as loud as jet engines (I've taken hard measurements - they will cause permanent ear damage even for a second), and so on. We don't get used to exposure, it will simply become one form or another of sensory torture if we don't buy ear defenders or have external measures in place to protect ourselves.

    Now. I will say, if you want to help her succeed in life, allow minor things, which have little consequence, to slip. Demanding everyone change clothes is not OK unless she is willing to do this herself. < I'd start here. We can respect your need for cleanliness, but you will need to suffer with us. And this need will be met if you also Do Your Part. I would stop cleaning up after her in the kitchen. Just leave her mess and leave her to clear it. Leave it for days if you must, but never negotiate until prepared to allow for the consequence. There has to be a continuity throughout and it may be extra work for you, mum, to be vigilant about these negotiations until there is a more fluid system.

    Learning to Respect one another has to be exemplified on fundamental levels. And the best way to begin to put this to practice is by using tools to ask why she is doing a thing and gently and thought-fully help her understand how to do it better if she can. 

    When ever I try to talk to her about the situation, she says 'yes' then carries on as before. 

    It sounds as if there is a great disconnect here and it may take a great deal of time to try and comprehend what she's receiving, how she's understanding priorities vs what you feel you're communicating. This woman talks a great deal about how confusing life is from our perspective: https://www.instagram.com/thearticulateautistic/

    But always remember, Rome wasn't built in a day! Only expect one thing to change at a time and once this new element seems to be functioning, move on to the next. :) 

Reply
  • I'm sorry to hear - this all sounds frustrating. You've not gotten the help you need to be able to help her it seems.

    I'd like to point out a few things that are happening just to help with perspective. Humans are like plants. Put them in the right environment and they thrive. In the wrong one and they will have trouble growing. Modern society is a mismatch for Autistic kids and adults. Schools and the education system don't teach in ways we would thrive, so it stunts our growth. If the school system was a little more like it used to be 100 years ago, it would be different. We would thrive in situations where Latin was taught and weeks were heavy focused on just a few subjects without interruption except a lunch break. In other words, focused learning with few breaks structured with older and younger kids. 

    Since we've been 'planted' like a banana tree in the arctic, society may find we don't begin to mature until 30ish. Until then we can feel useless, ghostly, distracted, pointless, out of place, and without purpose: like a little iceberg. We still need adults to work with us, to show not tell us and to spell out in detail from the fundamental ethics up how and why social operations exist like they do. How to garner a positive response and how that function creates a fluidity for everyone. There's a fun little book out I feel every teenager would benefit from called F^çk*ng Good Manners by Simon Griffin. If you're not too bothered by the authors ironic and sarcastic use of the the word. But it could help! In the Victorian Era, pamphlets were distributed to help civilise everyone giving them clear and detailed instructions of what was to be expected. And if I'm honest, the world expects Middle Class manners from every class. However, if you want to help her better comprehend how a good society functions, I'd pick up Erich Fromm's The Art of Loving and Revolution of Hope - and then read through them together over the next year. Honestly, I didn't have a decent vocabulary or an ability to access it decently enough until mid 30s. And even then it was difficult. Reading helped greatly. 

    At this age, there will probably be too much in her head to recollect very surface-level social mannerisms which non-autistics appreciate. Leaving without saying goodbye is typical for us and in a room full of autistics, we might all do this, go home with happy memories and look forward to seeing each other again. Hellos and Goodbyes are nominal compared to Depth of interaction and intimate friendships. Due to having a Different Salience Network - we feel everything (emotions and things like smell/taste) intensely. When young it's overwhelming. Even at 40+ I feel a demanded conscious effort with every detail to attempt to not respond inappropriately But goodness. Public loos are horrid smelling, I wear ear plugs as the dryers are as loud as jet engines (I've taken hard measurements - they will cause permanent ear damage even for a second), and so on. We don't get used to exposure, it will simply become one form or another of sensory torture if we don't buy ear defenders or have external measures in place to protect ourselves.

    Now. I will say, if you want to help her succeed in life, allow minor things, which have little consequence, to slip. Demanding everyone change clothes is not OK unless she is willing to do this herself. < I'd start here. We can respect your need for cleanliness, but you will need to suffer with us. And this need will be met if you also Do Your Part. I would stop cleaning up after her in the kitchen. Just leave her mess and leave her to clear it. Leave it for days if you must, but never negotiate until prepared to allow for the consequence. There has to be a continuity throughout and it may be extra work for you, mum, to be vigilant about these negotiations until there is a more fluid system.

    Learning to Respect one another has to be exemplified on fundamental levels. And the best way to begin to put this to practice is by using tools to ask why she is doing a thing and gently and thought-fully help her understand how to do it better if she can. 

    When ever I try to talk to her about the situation, she says 'yes' then carries on as before. 

    It sounds as if there is a great disconnect here and it may take a great deal of time to try and comprehend what she's receiving, how she's understanding priorities vs what you feel you're communicating. This woman talks a great deal about how confusing life is from our perspective: https://www.instagram.com/thearticulateautistic/

    But always remember, Rome wasn't built in a day! Only expect one thing to change at a time and once this new element seems to be functioning, move on to the next. :) 

Children
  • Just to add a few quick thoughts came to mind. She might appear to be 'bartering' if she feels misunderstood and a complete disconnect in other ways. This is quite typical for us. The heart of the matter the same as before, a sense of isolation and feeling often misrepresented without practical concrete steps connect.

    She will grudgingly help on her own terms in her own time, then expect something in return - it is always a bartering system

    The other to be mindful of is the Autistic drive to Reconcile and Resolution. It is part of the autistic-analytic natural writing. It is highly sought after by companies, we need those who catch the details not just those who see the big picture. Details matter when bridges can collapse or in other areas of risk management. This auto-default mode of troubleshooting when young has a facade of 'being hyper-critical'. When my son was young I always gently reminded him (as I am hyper-vigilant and overly conscious about reminding myself) we critically evaluate things not people. And what I mean is, while yes, we do evaluate how others misjudge us or misinterpret us or say one thing while behaving contradictory, we consciously make an effort to withhold that information so the other doesn't feel judged. If it is a system that is hurting us, hopefully we have a mentor who can teach us the art of reconciliation: Schedule a time to meet. Write down thoughts on what is happening and how I am impacted (this might not mean I am capable of expressing how I feel - we have trouble accessing vocabulary and often identifying feelings also known as alexithymia), we critique the seemingly invisible system and not the other, we make sure to ask, "why are you doing this?" we allow time for the other to have a think. And then hope there is a way to create Resolve. 

    Grudges are ways of holding the other hostage. Often, Autistics don't want repayment, just resolution. So if someone ruins a thing of mine and they cannot possibly pay for it, if they make the attempt to pay even a pound a week and from then on be vigilant about how they treat my things, requesting help or asking how to handle a thing, I am more than happy after a few months to just give them their few quid back. Re-connexion is FAR more important than money or things. The heart of friendship is respectfulness and trust, not money, not perfection, not pleasantries and not things.