A question to parents with older children on the spectrum or Adults with ASD.

[Marne]

At what age did you find your child the hardest work? Was it when they were younger (3-8) or teens?

I'm finding dd1 such hard work at the moment, she's 6 and i spend most of the day arguing with her, telling her to stop being naughty and telling her to shut up. When it gets to bed time she's getting very upset because she has been naughty and upset mummy, she say's things like 'i'm the naughtiest girl' and she says she can't control it and god made her into a naughty child (we are not church goers), she's starting to know that she is different and doesn't understand why she is like she is (we have told her she has AS), she seems very angry (mainly with God) for the way she is and she gets very upset.

During the day she winds her little sister up (who also has ASD), she seems to think its funny to tell dd2 what to do and say and tries to get her into trouble. If she wants something she will try and get her sister to ask for it, i kind of understand why she does this, dd2 has only just started asking for things and we tend to give her what she asks for (as advised by SALT), i guess dd1 feels like dd2 gets whatever she wants so why can't she.

Dd1 has always been hard work but it seems to be getting harder.

Will it get worse as she gets older?

Well ds is now fifteen, up until he was 7 or 8 he was hell to live with in fact I couldn't see how I could live with him within our family unit at times and contemplated separating to keep the others safe and provide ds with constant 1 to 1 supervision.
Around eight the aggression stopped, his speech was up to speed and he got more reasonable this has been the case ever since really.
But ds is very morose and pretty much non verbal again and his anxiety ranges from high to off the scale so it's not really easy just a different kind of hard tbh.
Dd on the other hand has always been ultra passive, the sort of child where you sat her down and three hours later she would still be in exactly the same place.
She is still very passive and you have to work hard to get her to make progress and that is sometimes tiresome but she isn't hard work like her brother.
Interestingly enough ds and dd are very close and openly adore one another and gang up on the older three. Ds can make allowances for dd where he can't for anyone else and dd will become very protective and defensive of ds where she doesn't generally have the impetus.
So I suppose what I am saying is that I don't think age is a factor it's more personality and how the asd presents itself and I don't think it's ever easy it's just different.

Dd2 sounds like your dd, she will play happily by herself and as long as she's confined to one room (our Dd2 proof sitting room) she will keep herself busy for most of the day.

Luckily so far dd1 has shown no signs of aggression but is very argumentative and has to have the last word (she's never wrong), i find this hard work (mainly because i also have to have the last word ).

She's starting to get really jelous of dd2, she keeps saying 'dd2 has more things than me' which is not true, if anything dd1 gets more than dd2 because dd1 can ask for things.
I have just shown her some photo's of out holiday and every time i show her a picture of dd2 she says 'that's not fair, there are more pictures of dd2 than me' which is also not true. On the other hand, when we are out she is very protective of dd2 and looks out for her.

Every age a stage has its good and bad points, all my Dd's [x3] are extremely argumentative. eldest not living at home now, thats improved our relationship no end LOL. Dd1 and 3 are almost certainly on the spectrum. I don't know what you are supposed to do when they think they are always right, I would love to know how to deal with this.
Try to focus on the good things that happen each day ,then you don't get a feeling of being negative all the time. Dd3 is not great with communicating her emotions except through laughter or tantrums, we are using a message box at the moment where I write messages about good things that have happened, we are hoping to be able to include some negative ones eventually but are just trying to open a line of communication at the moment.
Used a Diary with Dd1 at the end of each day we wrote about the good things that had happened in the day then at least she went to bed with a smile.[ Actually if she went to bed with a smile she quite often woke up with one]. Sorry long post but maybe a couple of ideas to make things a bit pleasenter for you.

I love the idea of a message box, when it gets to bed time dd1 can only remember the bad parts of the day. Today she has had and done lots of nice things (went on a bouncy castle, got a new book and had an ice cream from the van) but now she's saying 'i havn't had anything i wanted today' and i have to keep reminding her what she has had. Maybe writing things down would help, maybe i could write things on sticky notes and stick them in her bed room so she can see them at bed time?

secondary and puberty

I love the sticky notes idea. I might give that one a whirl.

Mine's 15, voice broken and shaving three times a week. In Y10.
The majority of our problems were in school and out and about if he had to interact with children, and it was very hard up until he was around 12 1/2, but got steadily easier from 12 onwards. He's definitely a fantastic teenager, and problems with school were less frequent from Y8, no incidents at all this academic year...

I would say 8 onwards. He is nearly 15 now and has been at a great residential since he was 12.5. Also we had no others until he was 7.5. I think the early years were a doddle compared even to now, although he's not at home fulltime, when he is its bloody hard although we love him to bits.

Oh I'm going to pinch the sticky notes idea too! Ds seems to focus on the negatives, like today he had an itchy back and declared today the worst day ever, even though we'd had a brilliant day. One little thing can make it the worst day ever, lol. I try to talk to him about the positives, but writing it down and reflecting on the good things at the end of the day sounds like a fabulous idea.

My lad's only 6 but I hope that he gets easier with age, or at least has fewer meltdowns and violent outbursts.

Difficult one to answer because I feel the hard times were less to do with the autism but about circumstances at the time.

Up till ds started school he was a joy, though there were obvious difficulties. He was very physical and could hurt other children unintentionally, but otherwise fine. The real problems started when he went into school at nearly 5 and he just didn't cope with it - very soon afterwards the real anger and behaviour issues started and it was downhill all the way from there.

Also between 6 and 7 we were pressing for a diagnosis and learning about ASDs so had little understanding of how best to work with him. Obviously that's developed with time and we know him well enough now to support him to suit his needs. He didn't get his dx till almost 8 and had no practical support from school or autism outreach till then.

He began to settle better after dx but still very difficult to manage in school and at the end of each day when he got home. Still no support for him though. He moved schools at 9 and initially settled well but again there was no support, so just before he turned 10 we took him out to HE.

He's now 11.5 and the last 18 months is probably the most settled period he's had in his life. I'm sure this is due to consistency - he's getting the right support all day and everyone he comes into contact with outside the home backs up our methods. Even the onset of puberty hasn't caused too many issues so far, though I expect there will be some as time goes on .

So to sum up I reckon it's not about when his autism was at its worst but when he's been least supported, either because we as his parents were learning what to do or because other people didn't know what was right for him either.

For us it has depended on his autism, or rather his behaviour, not the amount or quality of support at any time as we've always had pretty good services. As they get older, people with ASD seem more likely to become anxious and possibly obsessive which affects behaviour.

Puberty was definitely a problem for our DS. He copes pretty well with change, but couldn't cope at all with the changes that were happening to his own body. He also had a fair amount of normal teenage stuff on top. He is 15 and things have calmed down a lot.
I have met people who were warned that puberty would be a rough ride. I wish we had been.

Our DS? (now 17?) Appalling up to age 3.5 when he started talking in any real sense. Fairly OK until early teens, appalling again at age 12-14, great once we'd resolved schooling issue thereafter.

We're almost all rubbish at remembering the good stuff. Anything that helps us recall good things/people who like us when we're feeling down will really help. I make lists of people who like me so that when I go off on a hysterical 'I'm useless, everyone must hate me' patch, I've got that list to remind me that it's not true. Otherwise I just can't get myself out of it at all.

Well we tried the sticky notes tonight, i tried to explain what they were for but dd1 kind of made up her own rules, she now has 3 sticky notes by her bed reminding her of nice things that happened today (and yesterday) and she has gone to sleep without a fuss (and without Melatonin) without the hour of negativity we normally get.

I'm not sure if the sticky notes have helped or weather its the fact she's tired from her school trip today but at least she's gone to sleep by herself.

That's great news marne. I always found that Dd1 settled better if she went to bed thinking about nice things. Hope the sticky notes do work for you and your Dd if they can break the cycle of being negative then I think it can only help. Good luck

Brilliant! Really hoping you've found an answer. I might just try sticky notes next to the bed myself too.