Hello new here....and a little bit of advice needed please

Hello,

I am new here - my 5 year old son was officially diagnosed with asd and adhd a few weeks back.  I have always known he is 'wired' differently so even though it was a shock to be confirmed it was not a complete surprise.  His paediatrician said mainly high functioning aspergers. Now I am lost, we have an answer but I am totally confused and feel like I don't know if I am coming or going. I have so many questions and I don't know who to ask.....so I am hoping you guys might be able to help with your own experiences.

My son is nearly 6 and pretty awesome if I do say so myself :-) he is quirky, has these amazing obsessions that he masters, he is super clever, funny and sweet.  On the other hand he is physical, picks on his sister relentlessly, rude, acts spoilt, doesn't listen etc.

I am not sure how much of his behaviour issues are down to the aspergers/asd and adhd or just bad behaviour.  Some days I think oh he is fine what were we worried about and other days it's a non stop down hill spiral. I have always assumed (should never assume I know) that aspergers is a communication issue and not behavioural, am I wrong?  He does tick all the boxes for aspergers (words of his paed), obsessions, factual, won't always look you in the eye, socially awkward as in if he knows you then fine but otherwise he acts strange, he is physical when things don't go his way, he isn't great at going to sleep, needs things to go his way.  And to be honest it changes from time to time, used to be very ritual lead and no so much now.

I think I guess I am just so confused and I don't want this to affect him in any way and I wan't to discipline him in the right way and stop losing my way.

Thanks in advance Pia

Parents
  • HI! I'm new here too and what you have described sounds a lot like my boy. He's 9 and we have only just started the process of being diagnosed. I don't know much about separating behaviour as I'm just getting to grips with it all myself but just wanted to say hi and to let you know I'm in the same boat as you and you aren't alone with the confusion!

  • It's hard isn't it? One day OK next day not. I've seen a Paed for 4 years so I know they are right and I said I wld argue them to the end if they fobbed us off at the last appt but I didn't need to worry as he was clear that he ticked all the boxes for aspergers and now I'm like....nahhh. I think I need to take a break from it all and appreciate my kids.

    How is your boy day to day? X

  • He's usually fine until something doesn't go his way. He's usually a very polite, well mannered boy. His struggles recently have mainly been with his sister as he desperately wants to be more involved but has little obsessions like touching her belly. No harm but she hates it and at 2 year old is finding her voice to shout no at him every time. This upsets him and then he can't handle the emotion that comes with it. And today for instance, he has been fine all day but then we went to a play area and it was all too much for him and he sobbed in the middle of the play area then went into kind of a shut down where his speech slows and he doesn't follow simple instruction well. This was followed by 4 hours of tears on and off until bed time. 

    Other days he's fine all day, but those days, I've realised, are ones when he haven't visited his friends and I've been in control of the environment as such. I've only realised that recently though. But this is particularly difficult as he is a very sociable boy and wants to go out and visit all day every day, he just doesn't handle some of the social interaction well. 

    The fact that some days he's fine has been what put me off seeking a diagnosis as I thought I'd not really be believed as I couldn't put my finger on what the problem actually was as it didn't used to happen as often as it does now. It seems to be something every day/every other day at the minute.

    It is really hard, I hadn't realised how hard it had become until recently when I've been at the brink of tears constantly!!x

  • tell me about the tears....and the guilt!!!!

    I think when he has a a meltdown or goes on a constant wind up mode I need to take a step and look at why and not be quick to tell him off.  As a parent of a child with asd I think we are quick, well i know i am to tell them off or correct them so we arent judged. Do you have a good paediatrician and support at school?x

  • Yes I'm the same with the guilt! It's so hard!!

    I feel like if I can just teach him how to respond appropriately his life would be so much easier but I don't think what I'm doing is the right way for him. He then gets more anxious and does it all the more! So I've been trying really hard take a step back myself, I just can't bear the feeling that it's me making his anxiety worse!

    He has a Learning Mentor at school who is really good with him and is supporting us with the early processes of getting him a diagnosis. Our doctor is great but he hasn't seen a specialist or anything.

    Are you in the UK?x

Reply
  • Yes I'm the same with the guilt! It's so hard!!

    I feel like if I can just teach him how to respond appropriately his life would be so much easier but I don't think what I'm doing is the right way for him. He then gets more anxious and does it all the more! So I've been trying really hard take a step back myself, I just can't bear the feeling that it's me making his anxiety worse!

    He has a Learning Mentor at school who is really good with him and is supporting us with the early processes of getting him a diagnosis. Our doctor is great but he hasn't seen a specialist or anything.

    Are you in the UK?x

Children
  • I know. I know I sometimes make him go mad then I go mad and we go round and round.

    Yes I'm in surrey, you?x

  • I'm in South Yorkshire.

    It's frustrating isn't it. I'm working on me backing down not feeling like a defeat and just being a recognition that this maybe isn't the right way to get through to him. It's tough because I've had so many years doing it my way it's hard to convert to another style of parenting. But my way obviously isn't working!!

    Has there been much changed in school since you have a diagnosis now? My son's teachers have said there's lots they could do to help him manage\ emotionally but they can't put it in place until he has a diagnosis in case it comes back he doesn't have ASD and they aren't doing the right thing. Which I totally understand, I've just started work in the same school but in the lower years as a TA so I get it, it's just frustrating knowing there's some things that might make him feel better that he can't access yet x