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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.

Parents

  • 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.

Reply

  • 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.

Children
  • 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?