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Original poster

Autism

32 replies

N1956 · 20/01/2022 00:30

Hi I am struggling with my 13 year old autistic child's behaviour. DS is like a toddler in a big body. DS likes to do his daily tasks himself eg getting ready for bed etc. However can not manage his daily routines & has no concept of time, if you promt or try to help then the meltdowns start.
DS takes long as his like for his daily tasks that he will take hours to complete, in the mornings we are an hour or more late to school& DS is not in bed on time, there again he will take 1 or 2 hours for bedtime routine. Mornings he will not get out of bed, and we keep saying to him to get out of bed he will say I need 10 mins peace & those 10 mins can be a hour or more. He spends hours in the bathroom and will start playing With things in the bathroom. On days off or weekends we can’t go out because DS spend the whole day eating breakfast, we show DS the clock, set timers, rewards but we don’t seem to get anywhere.
Also DS rituals have increased that DS has to do everything first and it’s a nightmare we can’t even go to public places. If DS thinks we touched things that are DS’s has to have a meltdown and yells DS didn’t do it first then picks up toys now they will touch it second or makes his family too and DS does not want to be second. After explaining to DS that we didn’t even touch the item, toys, food, clothes etc but DS says that DS believes we did because his brain tells DS. Even going into the car or out of the door we have to start again and again until DS is satisfied. We try our best not to give in but we never win in the end.
DS is obsessed collecting DVDs, books and cds. DS plays games on PS4, but still likes to watch baby programs and will buy plush toys eg Peppa pig.
At home DS can’t stay without a devices , even at eating times DS has to have a device. DS wants to have everything his own way. DS has hyper mobility and sees OT therapist. Is anyone else experienced silmilar with there autist child & had help from professionals?.

OP posts:
Lostlostlost3 · 20/01/2022 00:38

I'm years behind you so maybe not the best advice.
Device for meals... not an issue, loads of people do it.
Soft toys... plenty of adults gain comfort from this.
A lot of his issues seem rooted in anxiety and a need to control. Do you think it could be PDA? I would suggest help from CAHMS but waiting lists are currently so long. Is private support an option? Could the National autistic society point you in the right place?

girlofthenorth · 20/01/2022 00:53

@Lostlostlost3 I do t think CAMHS would help as they don't tend to want to see autistic children ..I have learnt from bitter experience with my DD. But they might sign post to other services,
@N1956 try and see if you can get help and advice from the local SENDIAS - or go through the school senco. Does your DS go to mainstream school?
Don't worry so much about the toys or devices .
My autistic DD IS 17 now and still likes soft toys and sensory things and toys as well as the usual teen stuff.
Also are there any Facebook groups you can join for support and advice ? There might be some local groups your DS can join for free which might help with things like boundaries etc .
One thing I have learnt the hard way is that my DD needs some boundaries ..I know Difficult with the rituals , I have been through this too. She used to take hours to do anything . She still does, but it's quickened up a bit !
Does he have a list of things to follow for his routine , like get up, brush teeth , put on socks etc , I know my DD found it easier to see a list written down .

Original poster
N1956 · 20/01/2022 01:02

@girlofthenorth Yes he does attend a mainstream school with Individual Needs Department, school have said it’s not the right setting for him and we are now looking for a special school. That’s a good idea, make him a list of things to do. I’ll give it a try. Thank you

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Original poster
N1956 · 20/01/2022 01:07

@Lostlostlost3
Sometimes I do think it’s PDA, I am thinking of calling NAS for help.

Shall I contact my go that he could have PDA?.

Thank you

OP posts:
Bigettywitch · 20/01/2022 01:29

I have twins with asd and adhd diagnosis and it’s bloody hard…but we keep going on, assuring them that we love them…as much as my 2 hate me telling them…we must tell them, for it makes a realisation that they are loved

girlofthenorth · 20/01/2022 09:22

@N1956 we did the list from about year 8 literally it was
Brush teeth - 5 mins
Get dressed - 10 mins
With timings to make it easier for her to stick to it .
She is very routine orientated and slightest thing throws her off but finds it a bit easier now she is older .
She still puts all clothes out the night before too . Mornings are very rigid, if I interrupt now she hates it !
I was thinking PDA too, definitely worth looking into .
Also I was going to suggest finding a creative group for him . Like art or music , even drama . Would he like that sort of thing ? It can give the opportunity to learn free thinking in a controlled way !

MoMandaS · 20/01/2022 09:25

You could try sand timers to help him understand how much time he has to do each task, alongside a visual timetable (pictures tend to work better than words) of his routine and how long he has to do each bit, linked to the colour of the corresponding timer (you can get them for different lengths of time).

Original poster
N1956 · 20/01/2022 09:47

Thank you, I really like what you do & I am definitely going to make a list and see how he gets on. He enjoys music & drama ... I live in Bradford, do you know if any music/drama classes are available here?. Or where can I get more information from?

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Original poster
N1956 · 20/01/2022 09:50

Thanks, we normally do use a clock timer & we still don’t get anywhere. I like the idea of sand timer as it will be visual and he can see, I think that will make him acknowledge how much time he has.

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Original poster
N1956 · 20/01/2022 09:58

@girlofthenorth Have you used respite care?. If yes how was your experience, at the moment I have arranged respite privately and that is from 1 to 2 hours on Saturday. He imitates people around him and when he is over at a relatives he seems to be fine there & soon as he returns home his anxiety level has increased and will have meltdowns. I don’t feel keen sending him to residential respite care. @girlofthenorth @girlofthenorth

OP posts:
5zeds · 20/01/2022 10:03

Give him the device after he’s ready in the morning.

FreeFrenchHens · 20/01/2022 10:19

Could he perhaps be totally overwhelmed? Perhaps he's developed a combination of elaborate routines and shutdown at home to help himself cope. If so, fighting the coping mechanism doesn't really help, you need to look further back. Reduce demands and stress massively, including at school, until you get him in a place where he can relax his grip a bit.

Easy to say, difficult to figure out what to do. Things like being excused from homework or any really difficult lessons at school. How does he manage feeling overwhelmed at school, does he have somewhere safe to go? Safe people he can talk to? Does he use movement to feel better and could he have more opportunities for this? Could you make more dedicated time for him to do something he enjoys at home?

I can only talk from my own experience and of course I may be wrong, but with my son this combination of very strict routines and slowness is not "just how he is", it's a signal that he is not coping.

WhereIsMyGlasses · 20/01/2022 10:37

@girlofthenorth I've had a similar experience with camhs. In a recent conversation a duty worker said to me that camhs were a diagnostic service and didn't deal with mental health issues. So, the child and adolescent mental health service doesn't deal with child mental health! Confused

@N1956 that sounds so hard for you all. I agree that his obsessive behaviours sound quite anxiety driven. My child has autism and when anxiety has taken over control like behaviours are often displayed. I find that giving control and a little responsibility helps, not always, but sometimes. A list sounds a good idea, that way he could tick off what he's done. It's very hard not to feel angry and frustrated.

FreeFrenchHens · 20/01/2022 10:40

There is a place for timers and "job then fun stuff" - we do use both - but we also mix it up a bit. I wouldn't enjoy my hobby so much with a big visual timer bugging me. Sometimes it's quite productive to just let him relax for an hour and give a 5 min warning towards the end, and to build in downtime before stressful things to help him regulate rather than holding it off as a reward. But first, you need to get DS on board and talk to him about it when he is calm enough to have a proper conversation. And IME achieving that with an autistic child whose needs are not being met in school can be very, very difficult.

Whitefire · 20/01/2022 10:43

No advice sorry but your OP could have been written by me, even down to the age (though he will be 14 in a few days time) it's a constant battle.

IncompleteSenten · 20/01/2022 10:44

Have you heard of positive behaviour support? My youngest (now 21) is having this and it is really helping him.

amusedbush · 20/01/2022 11:24

I don't have kids but I am autistic and I really struggle with transitions. I think the sand timer mentioned above is a good shout because digital timers are abstract but the sand one is a lot more tangible.

You mention that he melts down when you prompt him. Could you please give an example of how you do that?

For me, I get very stressed and overwhelmed if I feel rushed or like I have competing priorities. Just the words "hurry up" or "come on" trigger it. Recently I was paying at the supermarket and I was asked to show something unexpected, and the woman behind me started impatiently tapping her bank card on her trolly while I was looking for it. Thankfully I was wearing my sunflower lanyard because I was on the edge of a meltdown and the till operator agreed to suspend the transaction and another person took me away to find what I needed and pay at a different, quieter till.

A check list and the sand timer are good and once he gets a better idea of time passing, you can agree on phrasing/time allocation for transitions between tasks. The immediate jump between things is difficult and stressful but if I'm given a timeframe for switching focus, it helps.

Original poster
N1956 · 20/01/2022 12:24

We just have to give in the end when he has meltdowns, otherwise battling never ends. Yes it’s when we keep reminding him to hurry up etc as you have mentioned.
Do you have a professional involved who has recommended a time frame?

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Original poster
N1956 · 20/01/2022 12:30

At school there is an IN department where he can go when he is overwhelmed, we make sure at home that he is relaxed we play music when he s doing personal tasks. We are late every where, appointments etc because DS is not ready. So many times we have started like 4 hours before so he is on time, which does work. But taking 3 or 4 hours it’s a very long time.

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LunaLoveFood · 20/01/2022 14:40

My ds responds better to alexa reminders, count downs and timers because its not me nagging him (hiss perception) but Alexa reminding him and keeping him on task.

Original poster
N1956 · 20/01/2022 14:55

@LunaLoveFood thank you, I have not heard of Alexa reminders, I will certainly look on to it.

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Original poster
N1956 · 20/01/2022 14:57

@IncompleteSenten thank you, I have not come across positive behaviour support. Can you please send me more details.
Thanks

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Original poster
N1956 · 20/01/2022 15:01

@Whitefire Hi thank you, this was the first time I posted on mumsnet, it was well over midnight, and have a chest infection at the moment when I wrote the OP. I do agree there was more to add and the way it is written a lot of it needs changing. Thanks for your help.

OP posts:
FawnFrenchieMum · 20/01/2022 15:30

If you are on Facebook join ZigZag Leeds Autisum Support group (I’ve seen in Bradford so close enough). I don’t have any specific advice but there is a wealth of information in that group. They also run activities and groups you may like.