Mother of recently diagnosed 15 year old autistic daughter

Hi, my daughter is struggling to accept her diagnosis which we have just lined up some therapy for and it is affecting her mental health. I want to wrap her up in cotton wool and protect her but I know that’s no good for her and also she is fiercely independent and won’t show her feelings. Can I get some advice on how best to help her when she pushes me away and also what expectations to put on her with regards to family events / important occasions etc?? I don’t know what to do for the best. Her main issues are noise, social interaction, food and anxiety. Any help would be gratefully received and I hope to be able to help you if I can too. Thanks 

Parents
  • Hello.
    I hope I can somewhat help...
    I was diagnosed when I was 14 years old (so similar to your daughter) and also went through a similar period to what she seems to be experiencing - i was in total denial about my diagnosis for the 18 months following it. Although it is something that I have now began to accept, I think that it is a long journey, as the diagnosis can be a hard one to wrap your head around.
    I think that the fact that autism is a life long condition means that it can be quite daunting when you first receive it, and I know personally  I began to very much overthought how it would affect me as I grew up.
    As well as this, the lack of understanding in society of autism (especially how it impacts women and girls) can be problematic when a young teenage girl receives a diagnosis. As they now have the knowledge that they have the condition, but the world around them has preconceived ideas and stereotypes about how autism presents itself.
    I think with regards to her accepting her diagnosis, it is very much going to be a matter of time, as well as the knowledge that people around her do not see her any differently now that she is diagnosed. I think as you said, wrapping her in cotton wool would not be good for her, but also may make her feel as if people see her differently and less capable/independent now that she has the diagnosis.
    Personally, I find it very hard to talk to my mom about my struggles, and so also push my mom away. I think just allowing her to talk about what she wants to and when she wants to will be best when she pushes you away. As well as this, I (personally) find it a lot easier to write down how I feel than I do to verbally express it, so if she can text it to you/write down anything she needs to express to you then that might help. Even if it starts off as just telling you how her day went then that's great - small steps! As well as this, make it reciprocal, open up to her about how your day went (for example) as it models that it's okay to share feelings/thoughts/experiences.
    Praise her for her independence but also help her to acknowledge that EVERYBODY no matter how independent, and no matter if they are autistic or not needs support at some points in their life. And that's okay!! Show her my repsonse (if you want to) and perhaps find a blog/post or YouTube channel of other teenage girls who have autism, as the knowledge that she is not alone and not less independent because of her condition may help.
    I think showing her that there are many people in the world who are autistic and independent might help her to understand that her diagnosis shouldn't limit her but instead be something that helps her to understand herself and how she works.
    With regard to family events and important occasions, I think expectations very much vary for me.
    If its a smaller occasion and/or I don't feel like I'm going to be able to do it then I just won't go.
    However if I need to go then I will put a few things in place. My family usually give a time frame that we are going to be at the event for, as then I know how much longer I have to cope for. As well as this, I always make sure that I have my phone on me, so that if I need to take some time out I can do so discreetly by focusing on something on my phone, such as an app, or listening to some music. As you mentioned that noise can be a problem for her, perhaps investing in some noise cancelling headphones would be helpful; if she'd rather something more discreet earplugs or earphones could also work.
    When at the events I think as long as she's there social interaction is very much something she should be able to engage with on her own terms - I usually find a base where I will spend most of my time (so a certain chair or room which I claim and get comfortable in). If I feel like I want to socialise I can do so, but if I need a break I try my best to pick up on my body's signals (a headache, increased stimming, pain behind my eyes, irritability) and then do so independently.
    When you mentioned her issues with food, I think that one can prove difficult. Perhaps taking a bag of snacks/safe foods with her would help. Or if she struggling with eating infront of people then maybe making sure that she has had something to eat before leaving, and then taking a calorific drink with her to tide her over may help. I guess if you are at a restaurant then it's a little more difficult, but just ensuring that she is near people she is most comfortable with, and taking some snacks with her (if she struggles with differnet types of food / a limited diet) could help - if people judge then that's their problem not hers.
    Anxiety is a tough one to tackle as of course it presents itself in so many different ways. But practicing going to different occasions and having methods in place such as knowing the time frame she's going to be there for, knowing whose going to be there, taking comforting (yet I'm also guessing discreet) items with her, chewing gum (if she likes it) or sucking on a sweet/mint may help. I think managing anxiety is very much a personal thing, and i think it is something that most people learn to do with time and experience, however just allowing her the time post family event/important occasion to recover and not planning anything directly after is super helpful. No matter what you put in place if she struggles with those occasions they are going to be exhausting when she attends (probably masking her autistic traits at the same time) its going to take a lot of energy out of her.
    I'm sorry this was so long. I hope something I mentioned can help you out a little bit xx 

Reply
  • Hello.
    I hope I can somewhat help...
    I was diagnosed when I was 14 years old (so similar to your daughter) and also went through a similar period to what she seems to be experiencing - i was in total denial about my diagnosis for the 18 months following it. Although it is something that I have now began to accept, I think that it is a long journey, as the diagnosis can be a hard one to wrap your head around.
    I think that the fact that autism is a life long condition means that it can be quite daunting when you first receive it, and I know personally  I began to very much overthought how it would affect me as I grew up.
    As well as this, the lack of understanding in society of autism (especially how it impacts women and girls) can be problematic when a young teenage girl receives a diagnosis. As they now have the knowledge that they have the condition, but the world around them has preconceived ideas and stereotypes about how autism presents itself.
    I think with regards to her accepting her diagnosis, it is very much going to be a matter of time, as well as the knowledge that people around her do not see her any differently now that she is diagnosed. I think as you said, wrapping her in cotton wool would not be good for her, but also may make her feel as if people see her differently and less capable/independent now that she has the diagnosis.
    Personally, I find it very hard to talk to my mom about my struggles, and so also push my mom away. I think just allowing her to talk about what she wants to and when she wants to will be best when she pushes you away. As well as this, I (personally) find it a lot easier to write down how I feel than I do to verbally express it, so if she can text it to you/write down anything she needs to express to you then that might help. Even if it starts off as just telling you how her day went then that's great - small steps! As well as this, make it reciprocal, open up to her about how your day went (for example) as it models that it's okay to share feelings/thoughts/experiences.
    Praise her for her independence but also help her to acknowledge that EVERYBODY no matter how independent, and no matter if they are autistic or not needs support at some points in their life. And that's okay!! Show her my repsonse (if you want to) and perhaps find a blog/post or YouTube channel of other teenage girls who have autism, as the knowledge that she is not alone and not less independent because of her condition may help.
    I think showing her that there are many people in the world who are autistic and independent might help her to understand that her diagnosis shouldn't limit her but instead be something that helps her to understand herself and how she works.
    With regard to family events and important occasions, I think expectations very much vary for me.
    If its a smaller occasion and/or I don't feel like I'm going to be able to do it then I just won't go.
    However if I need to go then I will put a few things in place. My family usually give a time frame that we are going to be at the event for, as then I know how much longer I have to cope for. As well as this, I always make sure that I have my phone on me, so that if I need to take some time out I can do so discreetly by focusing on something on my phone, such as an app, or listening to some music. As you mentioned that noise can be a problem for her, perhaps investing in some noise cancelling headphones would be helpful; if she'd rather something more discreet earplugs or earphones could also work.
    When at the events I think as long as she's there social interaction is very much something she should be able to engage with on her own terms - I usually find a base where I will spend most of my time (so a certain chair or room which I claim and get comfortable in). If I feel like I want to socialise I can do so, but if I need a break I try my best to pick up on my body's signals (a headache, increased stimming, pain behind my eyes, irritability) and then do so independently.
    When you mentioned her issues with food, I think that one can prove difficult. Perhaps taking a bag of snacks/safe foods with her would help. Or if she struggling with eating infront of people then maybe making sure that she has had something to eat before leaving, and then taking a calorific drink with her to tide her over may help. I guess if you are at a restaurant then it's a little more difficult, but just ensuring that she is near people she is most comfortable with, and taking some snacks with her (if she struggles with differnet types of food / a limited diet) could help - if people judge then that's their problem not hers.
    Anxiety is a tough one to tackle as of course it presents itself in so many different ways. But practicing going to different occasions and having methods in place such as knowing the time frame she's going to be there for, knowing whose going to be there, taking comforting (yet I'm also guessing discreet) items with her, chewing gum (if she likes it) or sucking on a sweet/mint may help. I think managing anxiety is very much a personal thing, and i think it is something that most people learn to do with time and experience, however just allowing her the time post family event/important occasion to recover and not planning anything directly after is super helpful. No matter what you put in place if she struggles with those occasions they are going to be exhausting when she attends (probably masking her autistic traits at the same time) its going to take a lot of energy out of her.
    I'm sorry this was so long. I hope something I mentioned can help you out a little bit xx 

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