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Newbie, very overwhelmed and just dipping a toe in.

Brightstar

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

  • Hi Brightstar, 

    I'm not sure how much help I can give you because I'm only 16 and (as you would probably hope for a teenager) I have no children! But after reading your post, I just wanted to say that I'm really glad your little boy has a diagnosis - my mum had her suspicions about me since I was 18 months old yet when she asked professionals, they (quite literally) laughed in her face. I didn't receive my diagnosis of Asperger's until a matter of days before my 16th birthday, which was just under four months ago.

    Now he is diagnosed, there are many places your family can look for practical and emotional support rather than just the medical input consisting of the giving of the diagnosis and the brief explanation of the diagnosis. This is good as sometimes the doctors, psychologists etc. themselves aren't too helpful. Like you said, they bombard you with information and don't always point you in a direction of where to go next. That's what happened with us. Don't get me wrong, they can be very good, and it has to be accepted they're often overworked. And the autism spectrum is a tricky business - I'm not sure how knowledgeable one can be about it if I'm honest!

    As for your guilt about how you're handling his difficult behaviour, I'm sure a lot of - if not all - parents of ASD children feel the same. My parents often say they feel guilty and confused about how they handle me, and from reading this I'm not sure if my challenges are comparable to your son's, especially with the other difficulties he has to cope with. So I'm sure sometimes it must feel like you have reached the end of your tether - mums aren't superhuman at the end of the day (they're closer than most, but not quite)!

    I hope I don't sound like I'm condescending to you. You have every right to think, "She hasn't got kids, she's still a kid herself, she's got no clue". But I hope I've helped. Like Sue said, you're not on your own! I'm sure he's a lovely kid and this will continue to develop as he gets older - I help out with the younger, more severe ASD children at school and they are the best people I know!

    Good luck!

    Liv Smile

Reply

  • Hi Brightstar, 

    I'm not sure how much help I can give you because I'm only 16 and (as you would probably hope for a teenager) I have no children! But after reading your post, I just wanted to say that I'm really glad your little boy has a diagnosis - my mum had her suspicions about me since I was 18 months old yet when she asked professionals, they (quite literally) laughed in her face. I didn't receive my diagnosis of Asperger's until a matter of days before my 16th birthday, which was just under four months ago.

    Now he is diagnosed, there are many places your family can look for practical and emotional support rather than just the medical input consisting of the giving of the diagnosis and the brief explanation of the diagnosis. This is good as sometimes the doctors, psychologists etc. themselves aren't too helpful. Like you said, they bombard you with information and don't always point you in a direction of where to go next. That's what happened with us. Don't get me wrong, they can be very good, and it has to be accepted they're often overworked. And the autism spectrum is a tricky business - I'm not sure how knowledgeable one can be about it if I'm honest!

    As for your guilt about how you're handling his difficult behaviour, I'm sure a lot of - if not all - parents of ASD children feel the same. My parents often say they feel guilty and confused about how they handle me, and from reading this I'm not sure if my challenges are comparable to your son's, especially with the other difficulties he has to cope with. So I'm sure sometimes it must feel like you have reached the end of your tether - mums aren't superhuman at the end of the day (they're closer than most, but not quite)!

    I hope I don't sound like I'm condescending to you. You have every right to think, "She hasn't got kids, she's still a kid herself, she's got no clue". But I hope I've helped. Like Sue said, you're not on your own! I'm sure he's a lovely kid and this will continue to develop as he gets older - I help out with the younger, more severe ASD children at school and they are the best people I know!

    Good luck!

    Liv Smile

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