What have I done

I feel so desperately sad and guilty for getting my son his diagnosis. Ben is 14yrs old and was diagnosed early this year. He has really struggled with what he perceives to be a horrendous label. Last night he got so upset and angry he smashed half the room up shouting how he hates the teacher that first mentioned getting him assessed and that he wakes up every morning scared friends will find out and he feels that each day is as bad as if he heard I was dying and he would rather die than go through each day feeling like this. I feel so guilty that I went through the assessment process, I feel like I have ruined his life when all I wanted to do is get him the help to achieve as much as I now he can achieve. I know he needs counselling to get through this but at the minute he refuses to go anywhere that is anything remotely to do with 'The A Word' as he calls it.

  • Hi,

    Please don't feel bad.  I wish I had known when I was younger that I was autistic.  I had to live the first 53 years of my life not knowing, and wondering why I didn't fit into society.  I am now doing my PhD.  There are good role models out there, you need to find them for your son.  Perhaps don't mention the A word for the time being.  Or there is a book written by a teenager about autism that may be useful.

    But please, don't feel bad.  I'm sure it was the best thing to happen to your son, he just can't see this yet.

    It is a pity too, that being described as autistic is a derogatory term within some young people's circles.  Perhaps it is used in his circle of friends/acquaintances.  

    Sorry, I feel useless in this situation, but felt I needed to reply.

    Margaret

  • As mild has said I spent 50 odd years not knowing why I wasn’t fitting in, I wish I had known when I was young, back then as Robert 123 has said any form of different was given the name spastic, As a young unknowing boy I visited the local spastic Society shop with great joy, It was my chance to find treasures for pennies, I remember the manikin outside had a boy with leg calipers on, it was there to put money in, he was holding a box, I thought the shop was for all boys with calipers to help them, It was used as  a derogatory word, 

    One day he will understand the importance of receiving the diagnosis, for me it will give me validation as for why I struggled and still do, 

    He needs to know it isn’t a disability And with a little help he can achieve great things in life. There are so many famous and notable people that were autistic, do a search and you will find many, He will come round eventually,especially as he has you, it must have been a big thing for you to accept his diagnosis, 

    my thoughts go out to you, be strong and come here if only to talk, we all share a common knowledge and some will help better as they may have gone through what you are going through  now.

    take care ().


  • Ben is 14yrs old and was diagnosed early this year. He has really struggled with what he perceives to be a horrendous label. Last night he got so upset and angry he smashed half the room up shouting how he hates the teacher that first mentioned getting him assessed and that he wakes up every morning scared friends will find out and he feels that each day is as bad as if he heard I was dying and he would rather die than go through each day feeling like this.

    Perhaps consider the following information and learn to recognise which of them your son has been and is going through at given points, singularly and collectively, during the preceding and following hours, days and months:


    • SHOCK & DENIAL- ...
    • PAIN & GUILT- ...
    • ANGER & BARGAINING- ...
    • DEPRESSION, REFLECTION, LONELINESS- ...
    • THE UPWARD TURN- ...
    • RECONSTRUCTION & WORKING THROUGH- ...
    • ACCEPTANCE & HOPE-...

    Recognising where you are at can also be incredibly useful too.


  • Hi nen67t, I can definitely emphasize with him (how's that possible, aren't we supposed to be really bad at that?). I also felt really angry with the person suggesting this first, a counsellor in my case. Next the woman who did the assessment. The bargaining was there too... Didn't let the anger out quite like him, but then I'm 2.5 times his age and a woman. That said, I don't think you or the teacher should feel guilty, not only because everybody did it with the best of intentions but also because hopefully it will eventually be for the best. My main reason for being angry was that 'now I know I'm always going to fail, so I will'. Maybe that sounds stupid, suppose it is to a point but thoughts don't go away only because we tell them they are stupid. Anyway, it would be a bit exaggerated to say I'm in peace with it now, but it is getting better. Think what's helping most is to see something positive coming out of it, somehow that seems the only thing making me move from point 4 to point 5 in Deepthought's list. Not so easy, you may think, because realistically the support is quite limited and even more so if you are desperate to make sure nobody finds out. But it can be little things and just being able to understand why you feel about something the way you do can make it easier to deal with it because you have a better idea what to try and avoid or what would help to get through things that are difficult. Or to understand that other people genuinely don't feel like you do in certain situations. At 14 it's incredibly important to fit in, so maybe having this knowledge could actually help him with that because it may allow for avoiding situations to happen where it could become obvious to his mates that he is a bit "weird". After all, the diagnosis has not made him like that, he has been like this all the time. Maybe he will get that impression from time to time (that it helps with fitting in, I mean)? Not sure if it would be wise for you pointing that out, maybe that's better left to someone else or to himself. Think for me that last one was the biggest revelation, so for the first time anywhere I've decided not to go to the dreaded Christmas party here because I've eventually figured out that other people genuinely enjoy being there, they aren't just all better at pretending, and they drink too much because they enjoy also that, not in order to get through the evening. And they also genuinely don't understand that someone else would feel different about it... So perhaps even though there won't be an awful lot of help for him, especially not of a sort he will want to accept at the moment, there may still be some little things where the knowledge comes useful. 

    And yes, like mld and Robert I've also heard kids shouting through the park "hey you autist", so I can certainly understand his fear of anyone finding out. That gets better when we grow up, but that won't provide much comfort now so you'll have to really stick to your promise not to use the A word (or promise it first if you haven't yet). At least making use of the knowledge doesn't require using any name for it.


  • Hi nen67t, I can definitely emphasize with him (how's that possible, aren't we supposed to be really bad at that?).

    In terms of 'us' feeling empathy with other autistic people, the expression "Each to their own," has some baring, involving emotional identification on account of similar or likewise ranges of experience ~ autistic 'sense and sensibility' sort of thing..

    Perhaps you and others might find the topic of 'autism and double empathy' to some extent relevant as covered in the following PDF link:


    http://www.tandfonline.com/doi/pdf/10.1080/09687599.2014.949625?needAccess=true 


    Or else consider just the following from it:


    The double empathy/cross-neurological hypothesis of Milton and Beardon can be summarised as follows:

    (1) non-autistic people appear to have as much difficulty in understanding autistic minds as vice versa.

    (2) autistic people often develop a greater understanding of society than non-autistic people develop of autism; and

    (3) autistic people have a similar ability to empathise with other autistic people as non-autistic people have with their peers.


    In order not to open a discussion here and go off topic from nen67t's inquiry, I have started a thread featuring this information ~ just in case people are inclined to discuss it, with the NAS link being:


    http://community.autism.org.uk/f/miscellaneous-and-chat/11136/on-the-ontological-status-of-autism-and-double-empathy


  • Hi, I'm not sure whether I can offer any helpful suggestions, but I would like to try. I wonder how badly he has been struggling to fit in, and whether he always hoped that he would one day. If so, the diagnosis might  seem like a burden and a loss right now. I hope that he will come to see the positive side in time - any bullies at school won't necessarily go easier on him because of the diagnosis, but teachers and others can now begin to understand him better. Also, he has a reason for being the way he is, and if he was feeling bad about himself and worrying that he wasn't trying hard enough, that can now change. Finally, there will be places where he can join in and feel accepted, either with other autistic people, or with neuorotypical people who understand about ASD. I wish you and him all the best.

  • Hi nen67t,

    It's possible that he may have difficulty processing and accepting the situation. I think that over time, he will learn to accept it, and things will hopefully get betterx

    Much love <3