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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

  • Congratulations your child has entered adolescence. Her hormones are going into overdrive and her entire mental well-being now revolves around having a social life.

    unfortunately if she is following the trajectory of most autistic children she doesn’t have a social life or a romantic life or anything. And while everyone else is bottling up and repressing these new and complicated feelings so as not to freak out their peers in all probability she is not.

    you’ve taken WhatsApp away from her because she was speaking to random people? possibly random people on the Internet are The only people willing to be her friends? Autistic children have to cast their social nets wide. Outside of their class, outside of their school, because it’s maybe one in 100 people their own age they have the opportunity to click with and form a connection.

    at the same time she’s full of teenage hormonal feelings just like her peers. Only unlike her peers she’s probably not waiting to try and figure out the new rules around this new aspect of her life and what is considered socially appropriate. She’s probably rushing into situations like a bull in a china shop.

    so my advice is simply this. Both autism and adolescence are like primal forces that cannot be stopped. You have to go with the flow to some extent just concentrate on curbing some of the excesses. The metaphor about how the strong tree bends in the wind is very apt. If you try and box her in, completely stigmatise these explorations, progressively limit her contact with the outside world and therefore her potential to form  new friendships more and more. You won’t protector her. At best you’ll push this issue into university when she leaves for freshers week and tries to compress six years of teenage exploration into three weeks and that could be a car wreck. At worst you might leave her depressed, insular and socially anxious and unable to engage with others.

    maybe I have a different view but back when I was 12 we didn’t have the Internet. kids that couldn’t make friends in school or didn’t want to stay in school played truant or just stayed away from home after school. they hung around in groups at bus stations talking to strangers from other schools or adults, not wanting to go home. Would you rather your daughter was doing that or socialising on the Internet?

Reply

  • Congratulations your child has entered adolescence. Her hormones are going into overdrive and her entire mental well-being now revolves around having a social life.

    unfortunately if she is following the trajectory of most autistic children she doesn’t have a social life or a romantic life or anything. And while everyone else is bottling up and repressing these new and complicated feelings so as not to freak out their peers in all probability she is not.

    you’ve taken WhatsApp away from her because she was speaking to random people? possibly random people on the Internet are The only people willing to be her friends? Autistic children have to cast their social nets wide. Outside of their class, outside of their school, because it’s maybe one in 100 people their own age they have the opportunity to click with and form a connection.

    at the same time she’s full of teenage hormonal feelings just like her peers. Only unlike her peers she’s probably not waiting to try and figure out the new rules around this new aspect of her life and what is considered socially appropriate. She’s probably rushing into situations like a bull in a china shop.

    so my advice is simply this. Both autism and adolescence are like primal forces that cannot be stopped. You have to go with the flow to some extent just concentrate on curbing some of the excesses. The metaphor about how the strong tree bends in the wind is very apt. If you try and box her in, completely stigmatise these explorations, progressively limit her contact with the outside world and therefore her potential to form  new friendships more and more. You won’t protector her. At best you’ll push this issue into university when she leaves for freshers week and tries to compress six years of teenage exploration into three weeks and that could be a car wreck. At worst you might leave her depressed, insular and socially anxious and unable to engage with others.

    maybe I have a different view but back when I was 12 we didn’t have the Internet. kids that couldn’t make friends in school or didn’t want to stay in school played truant or just stayed away from home after school. they hung around in groups at bus stations talking to strangers from other schools or adults, not wanting to go home. Would you rather your daughter was doing that or socialising on the Internet?

Children
  • in reply to Peter

    Hi Peter,

    Thanks for the comments, regarding her social life she does luckily have a good group of friends at school which is great and we would love to have her on whatsapp etc conversing, the problem arised when she was being message quite inappropriate messages from people who she claims are from some games, as an adult I can see through the fake profile photos and the way they are conversing.. I think you know where this is going.

    So I have had no choice but to restrict her usage on whatsapp, sadly this cannot be parent locked to stop these types of conversations. 

    But I do appreaciate what you are saying in regards to having friends and online friends, I would say the majority of my friends are online mainly due to moving and work networking etc. 

    Also this is the first time she has refused to go to school, she usually wants to go, the issue she has is with waking up, the reason I posted this today is the not wanting to go to school is quite abnormal for her.

    I would love nothing more than have her sit away playing her games and enjoying her group chats, but without being able to stop some of the above happening i'm not sure what the options are.