Newbie - advice sought

Hi there, hope I've posted in the correct forum.

5 year old son, David, recently given autism diagnosis, not entirely a shock as we've suspected for a few years that this was the case due to behaviour.

The good: Very loving little boy, likes cuddles, adores family members, loves looking at family photos and has an awesome sense of humour - loves making us laugh! Have recently ditched his dummy at night which he has adapted to well. A few years behind with speech and understanding but getting better at communicating all the time. Can ask for things and tell us if in pain (only a recent thing) Enjoys mimicking scenes from films. Laughs a lot. Mostly happy.

The not so good: Extremely limited diet (wont use cutlery) does not eat meat, veg, fresh fruit - limited to eating brown toast, porridge (has to be spoon fed, wont use spoon himself and has to be in a certain bowl or he will push it away), rusks, mini pizza, rice pudding and fruit pouches. Not interested in "treat" things like Mcdonalds/Chips/ice creams (maybe this is a good thing, but worth mentioning!) Can be hyperactive, mostly sleeps well but can wake at random times and be full of energy! Becomes very emotional when seeing children cry - will become angry and vocal towards them and put hands over ears. Changes mood completely. Same applies to certain scenes in films where characters become sad (Disney etc) although we do monitor what he watches. Still has a warm bottle of milk at night before bed - only still allowing this as he wont drink cold milk and we want to get vitamins in him! Also hits himself when he has upset someone else (for example if he hurts his sister playing rough) or when told off. Does not comprehend "accidents" - falls over, calls the floor "stupid" and hits it, children at school brush past him and knock him accidently, same thing. Does not like loud noises, often shouts and jumps about on hearing a loud motorbike, police siren or car horn. No sense of danger, has to be watched. Will climb, run off or go near water if left alone for a second when out - finds it funny. 

So that's David for you! Complex, but very happy mostly! He is under a community paediatrician however appointments only every 6 months or so. 

There's 1 issue we'd like to put out there to see if anyone can offer any advice:

1) Toileting - David is still in nappies and no amount of toilet training (including at school) has worked thus far. Whilst he is very sensory (for example, a single hair found on his hand in the bath sends him crazy!) he has no issue walking round or playing in a soiled nappy, before one of us realises it's time to change him. What can we do?

Any help or advice would be warmly received

Thanks - Jon

  • Sorry I don’t have any specific advice for this issue, but here is the NAS page on the topic (and hopefully some of the information there may be of assistance to you):

    https://www.autism.org.uk/about/health/toilet-training.aspx 

  • Hi there your little boy sound very very familiar to my 6 yr old son. A lot of his behaviour good and not so good is exactly what he does. As with the toileting we were directed to a continence nurse who we saw every couple of weeks. She was brilliant with him he wouldn't even sit on a toilet.  He actually looked forward to this appointment!! She gave lots of advice some very simple which you may have tried but totally understood our frustrations and helped us realise it would take a lot of time and patience. He's now completely dry through the day. Will now go to the toilet by himself. Still wet though the night but they provided us with brilliant mats to put on the bed which soak up to 20l all free which cost a small fortune to buy. Especially when you need a few. Like this morning I have 2 lots of his bedding to wash. He got up wet in the night and again this morning. You just have to go with it and praise any positives. I was worried about sleep overs etc but have to come to terms with for these few nights a pull up is needed. Then tell him at home we go back to no pull up. I'm told it will just "click" so fingers crossed. I get where you're at. Worth a try getting in touch with your paediatric team to refer you to the continence team though. She was brilliant. Even sent him reward certificates through the post which he loved. Sorry for rambling. Good luck. Time and patience is my mantra but it's hard!!

  • Becomes very emotional when seeing children cry - will become angry and vocal towards them and put hands over ears. Changes mood completely. Same applies to certain scenes in films where characters become sad (Disney etc) although we do monitor what he watches.

    Hello, it might be a good idea to check if he has mirror synaesthesia. It's worth ruling it out. If he does have it, this would explain some of his behaviour.

  • Hi- it took a few goes with my son to toilet train. I used Pirate Pete potty book (amazon). I then really went to town, i made a simple worded letter to my son saying if he can go to the toilet 5 times (pirate map / reward chart )he'd get a pirate prize.

    When he did that another letter and prize (it was a pirate poster) saying can he do 10? 

    With my son, i really have to work at getting these types of things in place. With toothbrushes, i found one that lit up for 60 seconds (i then bought 10 of them so i didn't run out) Cutlery my husband found a set in pound land that had coloured handles - and something with that worked. 

    I hope it helps x