Recently diagnosed autistic daughter

Hi, 

I am new to this forum but I've been recommended to post re my teenage daughters recent diagnosis and the troubles we are facing with her. I really hope somebody has some advice or at least a "we've been there and it gets better" message! 

Our daughter is almost 14 and was diagnosed with ASD three months ago following an episode last August which sent her into crisis (inability to regulate, shut down for 7 days etc) - to begin with she was very relieved when we mentioned ASD and went along to all assessments freely showing no reluctance to doing so. But for the past 2 months, possibly longer, she has been absolutely unbearable to live with. She doesn't communicate with anyone in her family and when she does talk she is just derogatory, rude, aggressive or asking for things to make her feel better. I have listed a few examples : 

- she doesn't want anything to do with her family. She has two younger sisters who she is just awful towards.. she makes it clear on a daily basis that we make her unhappy and spending time or talking to us is a waste of her time and that she hates us all. (She has said to both her sisters and her Dad that she wants them to die, numerous times) 

- Nothing motivates her. We have set a list of 'chores' for her to do to try and get her to earn a little bit of pocket money over the summer and she point blank refuses. 

- Her bedroom is revolting. She is so messy and her floor is now covered in makeup and she drags it through the house and covers herself in it daily (this is her ritual) and I always ask very nicely and subtly to tidy up and she absolutely loses it. 

- She expects everything at a drop of a hat and screams and shouts and constantly says that all her friends get clothes/nails done etc and she gets nothing. 

- There is absolutely no reasoning with her. She refuses any sort of authority or discussion re her behaviour. 

- If I ask her to do anything or to help in any way she replies with comments such as "you are just lazy and can't be bothered and that's why you are making me do things" and just refuses to do anything. 

- she spends most of her time in her bedroom and only comes out for food or to ask for us to buy her something. We have limited her social media time and she isn't allowed her phone after 10pm but she just sits in her room for long periods of time and if we go into our room she loses it with us screaming asking us to leave. 

- she is obsessive with her friends and says that they are the only think that makes her happy and she will kill herself if she doesn't see them. 

We live in a very safe environment with a very loving family and friends network. As parents we feel we have gone above and beyond to have her diagnosed as quickly as we could and have been in constant contact with school who have been amazing and supportive. We constantly give her the space to express how she feels as well as give her, her own space and respect that she needs that... but she is making everyone in our family miserable and I just don't know what else to do. 

Any help would be greatly appreciated. 

Parents
  • Gosh. this sounds severe. I am sorry to hear. I have a 20 something son, and I was once an undiagnosed daughter with a mother I no longer speak with. I have a feeling my mother is undiagnosed but from a generation of individuals who think poorly of Autistic and other neurodivergent traits.

    What I mean by severe is that this sounds like a great deal has been building for some time and finally crossed a threshold. I'm not sure what. With children, it seems to me much can be averted by addressing any conflict the moment it happens or before theres room for resentment to grow. But at this point, it really sounds as though some kind of professional help is needed to unpack everything which has - potential - built up and unravel a great deal of impact to find the source such as dynamics, perspectives, misunderstandings and so on. 

    If this were a situation with a couple, one might recommend a separation and potentially divorce. But with a parent/child the burden is on the parent, just as with the owner of a company, the weight is on the one who's investment is at risk or who's role suggests an authority. A company will bring in professionals to help re-evaluate how operations are impacting employees if it seems everything is in decline.

    Many times we weren't parented correctly and are simply repeating some kind of social indoctrination which might involve unrealistic expectations. It's so easy to assume our children are exactly like us and will respond to external stimuli or even internal the same. I recognised when my son was young I was out of touch with myself - my words and actions didn't match my intention. I recognised I was exhausted by 26, worn down and left unprotected. I would break down constantly and it was affecting him. It was really hard to parent. I needed a great deal of time to heal myself from far too much trauma and I was so young. At that point I had to overhaul my life. Things just couldn't continue the way they were. We all have a different story, but this is a familiar one to many. 

    I had to learn how to respect my son, how to afford him dignity by pulling him quietly aside and asking why he did a thing - careful not to humiliate him in front of others which my mother often did to me without noticing. She was driven to be truthful at any cost and ruin my reputation in the process - I never wanted to do this. You could say this was a valuable lesson, but my son has learned how to afford others dignity by how I offered it to him. There was a lot of unnecessary cruelties I had to take notice of lest I repeat them. This isn't everyone, but it is important to understand how the majority operate will traumatise any young Autistic child. Our motives can be incredibly different. How we use language different. How well does she command vocabulary? If it's poor, she may be like many of us with a type of alexithymia and aphasia. I cannot access the right words for everything going through my head still - especially when stressed, though I don't allow myself to be subjected to stressful situations any more if I can do something about it. I couldn't string a proper sentence together until around 30. I managed life by being silent and 'dressing the part'. 

    The two things that can overnight create substantial change would be to always be respectful regardless of how another (including my child) operates. Respect is free. I can be grounded in myself and give it and it is always about my strength and never really about the other. When they're ready and when they sense your dependability on this matter, they'll participate. The second thing which can overhaul a situation like this is to never interrupt and do not allow interruptions. If this hasn't been in place since their young years, it will take some adjusting. This doesn't mean to respond with disregard. If I'm on the phone, I can say hold on a moment, tell my child I want to hear them out but I'm focused on this moment. I will be off in 30 minutes and will attend to whatever they need then. And then proceed to follow this exactly. Again, this is a matter of handling everything and everyone with respect (myself included). For an Autistic, follow-through, one-thing-at-a-time, allowing focus, never interrupting, Monotropism monotropism.org is the key here. 

  • Thank you for your reply. 

    Well until 6 months ago she had been masking so I can't help but feel her diagnoses has just made everything a million times harder as it's all come at once. We always resolve all conflict head on and keep open communication at all times as a family.... she really has no reason to hate us if I am honest. We couldn't do more for her and she's 13 years old with no trauma, a secure family setting, has never wanted for anything, good education etc. 

    One thing I am concerned about is the amount of time she spends in her room on her phone. Would you suggest taking her phone away for an hour a day etc? She constantly says how unhappy we make her. but we aren't actually doing anything other than not giving her everything she wants at a drop of a hat! But I guess for her that's the worse thing we can do.. 

    She is high functioning so has always been able to exceed well in education and has many friends so I am not concerned as such regarding communication but she is so unbelievably disrespectful and rude when she does communicate. I think your comment re respect is interesting as she clearly has none for us and I guess she thinks that we have none for her.. will work on this. 

    Thank you again 

  • I'm uncertain about a few things here. First of all, all Autistic, dyslexic and ADHD kids will have internalised trauma. The world is not a safe place for us. But second: 

    Most Autistics struggle making friends, struggle with alexithymia, and communication. So, I want to make a suggestion. 

    Autism can appear similar to ADHD in 2 very fundamental ways: a  hyper-sensory salience network (or an inability to dull the senses the same) and Monotropism. However, they can be VERY different. Is it possible she's ADHD? In my experience, it seems there's such a difficulty understanding the difference that kids end up misdiagnosed, especially young females. ADHD is a big difference in biology which impacts motivation and many things you've described here. There can often be far more anxiety with ADHD kids as it seems they 'speak' both autistic and neurotypical, which often means they're fully aware they are unliked and working even harder with friendships. Autistic kids might not know others don't like them just sense something is off and have trouble putting the pieces together. Autistic children don't tend to be this social, but ADHD can appear "obsessed" with multiple friendships - deeply impacted and in need of greater stimuli than they get in modern society so might appear like extroverts (most actually need a good amount of alone time and don't realise it until they're older).

    If she's doing well at school, a screen can help with regulation at home. She might actually respond better to video games, which it can help them de-stress. A good reason to swap out a phone for a video game is the messages kids get online. This may not be what you want to hear, but my son regulates with video games. They also need a sport. Maybe even combine the two and get a Wii.

    It's important to allow her to go through this process and be angry. Allow the emotion and give her room to go through them, never taking offence. Help her decompress. What you ultimately want is to support her difficult emotional states and affirm her being and also help her appropriate her anger: "It's ok to have big emotions, howl at the moon, sing along with the radio, but practice not speaking cruelties. Troubleshoot the issue, don't destroy the human. Help me understand what you're frustrated about."

    The world is cruel place. The deeper one goes the darker it can get. Know that if you can absorb her anger and allow her to be completely open and raw with you, in 10 years or less, she will be open about more than just all these frustrations. It's just tough at this stage. 

    It's hard to know if there are things we're doing they're responding to. We're never perfect, but if we can be open to learning how to be better and helping them express what is hard to navigate, eventually they will learn by proxy. A thing to mind though, is these children sense deeper systems at play without knowing the physics or psychology. So if we have a favourite, ND children can sense this... and so on.

Reply
  • I'm uncertain about a few things here. First of all, all Autistic, dyslexic and ADHD kids will have internalised trauma. The world is not a safe place for us. But second: 

    Most Autistics struggle making friends, struggle with alexithymia, and communication. So, I want to make a suggestion. 

    Autism can appear similar to ADHD in 2 very fundamental ways: a  hyper-sensory salience network (or an inability to dull the senses the same) and Monotropism. However, they can be VERY different. Is it possible she's ADHD? In my experience, it seems there's such a difficulty understanding the difference that kids end up misdiagnosed, especially young females. ADHD is a big difference in biology which impacts motivation and many things you've described here. There can often be far more anxiety with ADHD kids as it seems they 'speak' both autistic and neurotypical, which often means they're fully aware they are unliked and working even harder with friendships. Autistic kids might not know others don't like them just sense something is off and have trouble putting the pieces together. Autistic children don't tend to be this social, but ADHD can appear "obsessed" with multiple friendships - deeply impacted and in need of greater stimuli than they get in modern society so might appear like extroverts (most actually need a good amount of alone time and don't realise it until they're older).

    If she's doing well at school, a screen can help with regulation at home. She might actually respond better to video games, which it can help them de-stress. A good reason to swap out a phone for a video game is the messages kids get online. This may not be what you want to hear, but my son regulates with video games. They also need a sport. Maybe even combine the two and get a Wii.

    It's important to allow her to go through this process and be angry. Allow the emotion and give her room to go through them, never taking offence. Help her decompress. What you ultimately want is to support her difficult emotional states and affirm her being and also help her appropriate her anger: "It's ok to have big emotions, howl at the moon, sing along with the radio, but practice not speaking cruelties. Troubleshoot the issue, don't destroy the human. Help me understand what you're frustrated about."

    The world is cruel place. The deeper one goes the darker it can get. Know that if you can absorb her anger and allow her to be completely open and raw with you, in 10 years or less, she will be open about more than just all these frustrations. It's just tough at this stage. 

    It's hard to know if there are things we're doing they're responding to. We're never perfect, but if we can be open to learning how to be better and helping them express what is hard to navigate, eventually they will learn by proxy. A thing to mind though, is these children sense deeper systems at play without knowing the physics or psychology. So if we have a favourite, ND children can sense this... and so on.

Children
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