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Looking for some support and advice for my 12 year old daughter with ASD.

Sam M

Hi, 

Will start by saying this is my first time frequenting one of these forums (something I probably should of done a long time ago). Sorry for the bad grammar or erratic writing, trying to get this out of my head into text before its replaced with other things.

My daughter is 12 years old and was diagnosed with ASD 4 years ago, earlier on things where managable and we knew how to cooperate with her, but lately ( the past year) things are progressingly getting worse. To the point I have no idea what the future holds for her or for our family, she is the middle child of and has an older sister and toddler sister. 95% of the time they get on fine, only when she has meltdowns do i get concerned about her being around them.

The meltdowns ( i think thats the best way to describe them) started to get more frequent in November last year, since then it has become more and more frequent. The meltdowns will usually start with her refusing to talk, then escalates to breaking stuff like pencils and pens, then sometimes escalates to trying to lock her self into rooms. Most of the time now I have to remove the locks as I fear she may intensionally or unintensionally hurt her self ( Although I'm not conviced she will actually hurt herself).

Some other things that have happened recently which i feel have had a ripple effect into her behaviour:

  • She is no longer allowed whatsapp or discord on her phone, this is something I have initiated as she was speaking with a lot of random people who she doesn't know and could not confirm there age or anything. ( Not sure if I am wrong in this but she hates me for it)
  • I have implemented a reward of sorts, if she wakes up on time without intervention than she can go to bed later for example she has to wake up at 6am to get to school on time, if she wakes up fine I allow her to stay awake until 9pm rather than 8.30pm. (again not sure if this is even a good thing but keeps the peace) 
  • I have had to restrict content on devices and accounts, I thought most of this was already done but I found out she was listening to a lot of explicit content and when ever we restrict something she finds a way around. 
  • Refering to the above she refuses to have her Alexa alarm clock in the room due to not being able to listen to what she wants. ( this will lead on to the next part)

This morning she has now refused to go to school, she had no alarm due to refusing to use the alexa (even when she had a normal alarm she refused to use it, only since allowing her to stay up later has she taken to using an alarm). Social services have been involved they made there visits and their checks but said theres no issues with home life so not much they can do apart from get us intouch with the local Mental Health authority in my area. Which we now finally have a interview for her in early Feb (thats if she decides to take the call).

I'm running out of hope and honestly feeling like why do I bother, I try my hardest to please her and tread on eggshells around her but i'm starting to give up. i've tried working on the communication with her, giving her incentives.

I know I'm not the best parent but I'm trying my hardest at this point, as much as I feel like I've given up i'm trying to get as much knowledge and experience as I can.

Parents

  • I assuming that she recently made the huge transition from primary to secondary school. That can be extremely challenging for autistic children and can result in an increase in meltdowns.

    What commonly happens is the child masks at school, just about holding it together while hugely stressed and overwhelmed. Then at home they explode with frequent meltdowns.

    What she needs is plenty of alone time to 'decompress' after the pressures from school. Arriving home exhausted and overwhelmed and possibly in a state of shutdown, her inability to communicate by speech is not the same as a refusal to speak.

    Sam M said:
    The meltdowns will usually start with her refusing to talk

    Appreciate that talking for autistic people can be difficult, especially when overwhelmed or overloaded. Try not to see this as a refusal but more as a need. If you allow her space and to communicate when she is ready then perhaps some of the meltdowns could be avoided. Feeling pressured to talk when she isn't in a position to do so will just escalate the situation. Perhaps another method of communication might work better for her in those situations. Allowing her to retreat to her room can help as long as you are happy that she is safe and not likely to hurt herself.

    Sam M said:
    whenever she has these meltdowns, after a while she will emerge quite tired and as if nothing ever happened

    Yes that's exactly how I am after a meltdown, They are exhausting and in that post meltdown state talking is beyond me. I may have some memories of it but I do not want to be reminded of such a distressing experience. It is important to understand that meltdowns will be distressing for her and that she isn't in control during a meltdown. Meltdowns can't be controlled by punishments or rewards. It is best to try and work out the triggers and prevent them.

    Sam M said:
    This morning she has now refused to go to school

    The fact that she is now refusing school would suggest that the issues causing this change are there rather than at home. You shouldn't blame yourself, you are clearly doing your best in a very difficult situation. Try to reassure her that she can talk to you about whatever is troubling her at school or online.

Reply

  • I assuming that she recently made the huge transition from primary to secondary school. That can be extremely challenging for autistic children and can result in an increase in meltdowns.

    What commonly happens is the child masks at school, just about holding it together while hugely stressed and overwhelmed. Then at home they explode with frequent meltdowns.

    What she needs is plenty of alone time to 'decompress' after the pressures from school. Arriving home exhausted and overwhelmed and possibly in a state of shutdown, her inability to communicate by speech is not the same as a refusal to speak.

    Sam M said:
    The meltdowns will usually start with her refusing to talk

    Appreciate that talking for autistic people can be difficult, especially when overwhelmed or overloaded. Try not to see this as a refusal but more as a need. If you allow her space and to communicate when she is ready then perhaps some of the meltdowns could be avoided. Feeling pressured to talk when she isn't in a position to do so will just escalate the situation. Perhaps another method of communication might work better for her in those situations. Allowing her to retreat to her room can help as long as you are happy that she is safe and not likely to hurt herself.

    Sam M said:
    whenever she has these meltdowns, after a while she will emerge quite tired and as if nothing ever happened

    Yes that's exactly how I am after a meltdown, They are exhausting and in that post meltdown state talking is beyond me. I may have some memories of it but I do not want to be reminded of such a distressing experience. It is important to understand that meltdowns will be distressing for her and that she isn't in control during a meltdown. Meltdowns can't be controlled by punishments or rewards. It is best to try and work out the triggers and prevent them.

    Sam M said:
    This morning she has now refused to go to school

    The fact that she is now refusing school would suggest that the issues causing this change are there rather than at home. You shouldn't blame yourself, you are clearly doing your best in a very difficult situation. Try to reassure her that she can talk to you about whatever is troubling her at school or online.

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