Newbie, very overwhelmed and just dipping a toe in.

Hi, my little boy who's almost 5 was diagnosed yesterday with autism. It didn't come as a surprise and I thought I knew what to expect having worked briefly with autistic children in the past as a student teacher, but have been bombarded with information all of a sudden and I'm a bit lost. I have no idea where to go next.

My son's medical history is very complex, he has a brain injury which we assume has led to the development of the condition. People keep asking me "where is he on the spectrum?" and I have no idea how to answer that. His pediatrician told me she believes as he develops we will most likely find his condition leans more towards Aspergers. He also has mild cerebral palsy as a result of his brain injury, amongst other medical issues due to a congenital condition.

It has been a bit of a relief to get the diagnosis as it explains so many things that just didn't seem in keeping with other children his age. He has no interest in socialising with other children, he tolerates them and is aware of who other children around him are, but other than family children he is not interested in them at all, preferring to seek out the company of adults. He loves to chat with adults but uses a lot of learned phrases and very often his speech is random, although he has a huge vocabulary he just uses language out of context.

We've had a number of issues recently with his behaviour and I know we have not been handling difficult situations well. We very often resort to shouting because sometimes it just seems like nothing is going through to him. He does everything on his own terms and sometimes it has just felt like he is being deliberately naughty. I feel so guilty about how we have dealt with his behaviour when it hasn't been his fault. We've also had a lot of problems with the toilet, he has been toilet trained day and night since the age of 3 but recently he has been soiling himself a lot and I don't know now if this is related to the autism or if it might be something else. Sometimes it's 5 or 6 times a day and he very often doesn't even seem to realise it has happened. It's very frustrating and again, something I don't know how to handle.

Sorry for my big ramble. I obviously needed to get it all out. I don't know where to start.

Parents
  • I know what you mean about the amount of information...its amazing and slightly frightening as well as there's so much of it...the spectrum thing confuses me to when someone asks me I just say "she's on there in the mild area I think"

    i gotta be honest my girl drives me absolutely mad sometimes with her behaviour and i've yelled at her in the end to try and make her see what she's doing is wrong...it does feel awful to do it and i know how you feel but it does happen when frustration and a total apparent lack of response occurs so please try not to feel guilty it's not your fault this happened.

    toilet training can come much slower to children with autism and it just develops the same as with kids that arent autistic just at a slower rate, my friends son outright refused to go the toilet when she tried to take him out of nappies until his body forced the release, and he is still in pull-ups part-time but he is coming...I had similar issues with my son he was great with the first stage of his toilet training but the second no way he would hold it in until his bowels were overflowing that took a lot of sorting out but we managed but he still regresses now and then.

    something that might help is a tight routine for him maybe try a "picture list" to help get it established so he knows what's happening when, it helped with both my son and daughter and i know it went a long way with my friend so maybe it'll help you to

    hope it helps

Reply
  • I know what you mean about the amount of information...its amazing and slightly frightening as well as there's so much of it...the spectrum thing confuses me to when someone asks me I just say "she's on there in the mild area I think"

    i gotta be honest my girl drives me absolutely mad sometimes with her behaviour and i've yelled at her in the end to try and make her see what she's doing is wrong...it does feel awful to do it and i know how you feel but it does happen when frustration and a total apparent lack of response occurs so please try not to feel guilty it's not your fault this happened.

    toilet training can come much slower to children with autism and it just develops the same as with kids that arent autistic just at a slower rate, my friends son outright refused to go the toilet when she tried to take him out of nappies until his body forced the release, and he is still in pull-ups part-time but he is coming...I had similar issues with my son he was great with the first stage of his toilet training but the second no way he would hold it in until his bowels were overflowing that took a lot of sorting out but we managed but he still regresses now and then.

    something that might help is a tight routine for him maybe try a "picture list" to help get it established so he knows what's happening when, it helped with both my son and daughter and i know it went a long way with my friend so maybe it'll help you to

    hope it helps

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