• Replies 6 replies
  • Subscribers 66 subscribers
  • Views 97 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Son struggling with autism diagnosis

K17

Hello. My 11 year old son has recently had an autism diagnosis. It distressed him greatly to the point where I can't have a discussion with him to reassure him as he gets too distressed to engage. When I bring up the topic he says he wants to die. At the moment it seems like there is no positive in a diagnosis. He is otherwise quite content in life, it is only this that causes distress. School haven't really been much help and I worry for his transition to secondary school in September. That his autism, while not causing issues for him now, may in the future. I think part of his distress seems to come from negative thoughts about autism from his peers and a general lack of understanding. Also that those in school with a diagnosis are viewed as disruptive or weird (I know this is wrong I just think that is the perception). My son is very quiet (aside from with close friends or family), conforms, does well at school. I don't think he wants to stand out or be seen as different. Does anyone have any advice for how to talk to him and reassure him? I want him to be comfortable in himself but also understand himself to help with any difficulties he may face in the future. At the moment I feel like by getting him assessed and the diagnosis I've just upset a happy child. It is not helping him, just causing harm. He is not a difficult child to parent (though we have adapted to avoid things he struggles with) so I feel a fraud when I see so many parents struggling. I don't feel I know anyone with a child like my son I can relate to or who understands. Sorry if this doesn't make sense, I just want my son to be happy and understand himself. I feel really alone. There is no support offered after diagnosis. School have yet to even meet me to discuss the report even though it came over a month ago and even though I told them it was causing my son to want to die.

  • in reply to K17

    I think almost the best understanding might be that he doesn't need the socialising as much, perhaps what he gets at school is plenty for him and he actually needs time resting at home so he can have a good time at school. If he were socialising a lot, he might hit burnout, and then deteriorate and not manage school anymore. 

    I think just being there as his back up will be invaluable, and the more you know, the better you can support from the sidelines (like is he has a social day, don't plan anything afterwards). 

    You do need support too, you could consider counselling yourself as a way to support him by proxy -a calming parent will be better placed to support everyone when you look after yourself. 

    Also, you don't have to be autistic yourself to be here, if you're a parent, you can talk about it with other parents when they post, at least it doesn't effect your son then, but does give you a chance to talk about it. I post here for myself and as a parent. 

    I think with a diagnosis, at the local highschool, I think my son might get an enhanced transition. Perhaps you can quietly email the high school he'll go to, and see if you can meet with someone who can explain what that can provide discreetly?

  • Thank you so much for all the replies and advice. I will take all on board and look at the links. I do hope that in the future he will look back and be glad of the diagnosis and find it helpful. When researching, I see so much of people who found out as adults and wished they'd known sooner. I think it's hard as to him I don't think he feels like he is struggling with anything. I think he may be aware he is different to his peers in some ways, but doesn't really mind. The things that led to the diagnosis aren't really evident to others e.g. he hates clothes and won't wear anything at home. He has a few close friends but always wants to be at home. I worry he is not going out and socialising much especially compared to his older brother who is really confident and outgoing. But he is happy as he is so maybe I should let him be? When he was younger I think I forced social situations on him thinking it was good for him but  that ended up distressing him as he'd rather be quiet on his own. My husband is currently undergoing assessment for autism. I am a teacher so have some understanding, though not expert and it is different when it's your own child. It's hard to know whether you're doing the right thing. I do worry with secondary school, as there's so many children with SEND and not enough support, as he is not disruptive, conforms, does well academically he won't get any support and will go under the radar as he has at primary school. With telling people, he doesn't want anyone to know and I want him to be in control of who knows but on the other hand I want people to understand him. I want to talk to his friends parents to help their understanding when he's with them but don't want to distress him more by telling people when he doesn't want me too. It does mean I don't have support for myself as I can't tell anyone.

  • Hello. I don't have much in the way of advice, but hope to offer some reassurance! 

    I remember being resistant to getting a diagnosis when I was about 11, so much so that my parents dropped the idea. To me it seemed like a really negative and completely unnecessary thing at the time. However, looking back it definitely would have helped a lot, especially understanding the difficulties with transition to high school. Hopefully your son will come to see his diagnosis more positively too. Others have already made some good suggestions in this thread, which I hope will help!

  • Hi K17,

    My son is also 11 and was diagnosed with autism last December. He's a bright boy, but he has had problems in school with being slow at doing work, even though what he does is to very high standards. When I've been talking to him about it, I've been framing it that we were just trying to understand him fully to make his life easier, and to help him with areas he does find difficult. It must be harder if he's doing fine in school, is there any other areas that have caused him trouble, and show him how understanding has helped, even at home? Also you can make sure he knows he doesn't have to disclose to anyone if he doesn't want to, especially friends. 

    One of the other things we've been doing is giving him kids books to read with autistic characters, like 'A Kind of Spark' and it's sequel. Also, although he's 11, we've been watching the adult comedy show Dinosaur together. The main character is autistic, and the actor is on real life. I would strongly suggest you watch it first though so you can decide for yourself, and to cover questions! As my son will be going to high school after the summer and will hear bad language and older stuff, we've been okay with it as we world prefer to control the exposure and be there to explain things rather than hearing them at high school. (Plus a lot of the more adult jokes goes over his head).

    I should also disclose that while researching it, I realised I myself was autistic, and it was why I didn't see it for so long in him. I got diagnosed too privately so I could show him that it was okay. The main point being, pointing out adults and especially famous people with autism and showing that it's not terrible. We watched celebrity traitors and Cat Burns mentions her being AuDHD (so you don't need to bring it up, but it happens while watching the show if he doesn't like you talking about it). 

    Most importantly, if you are concerned about him taking it bad, it might be worth talking to a GP about potential depression, in case you can get him some therapy if you can't for autism support (I know it's rubbish, they should offer kids support to understand it).

    Best of luck.

  • Hello!

    I don't have autism but I know people who are i.e my best friend is, well possibly, not been diagnosed yet) and when I realised that she is / might be. I did lots of research on Autism including masking which lots of autistic people do. 

    Here is the link - 

    Masking

    Hope this helps!!xx

  • I'm sorry to hear about your son feelings, I hope he get can past these and see there is a bright side of knowing he has autism

    I was diagnosed as an adult so I can't really give advice about school etc but I can share some things that could be useful: 

    1. Tell him it doesn't change who he is, it just helps people understand why he does things that others don't

    2. I'm not sure which would be helpful but I think there's books for young people in understanding autism and help for them understanding who they are with it

    3. Maybe make a list of the sensory experience resource: I used it and found it helpful, then maybe share with the school when you get the meeting so they understand what adjustments they can do to help limit sensory overload

    https://nas.chorus.thirdlight.com/file/24/xT2FqU_xTq.MH1LxTXUAxTdQY3l/Autistic-Sensory-Experiences-resource.pdf

    4. Finally I can suggest to keep being supportive, at I can see you are, it's important your son knows he's not alone - maybe there's a autistic group he could join to meet like minded people? I think the below child help finding places etc

    https://www.autism.org.uk/autism-services-directory

    I wish you well and hope it all gets better