How independent are your children with ASD?

[sphil]

DH and I were talking last night about trying to help Ds2 (9, autistic with severe learning difficulties) become more independent. It's an area we've neglected, to be honest, and I'm very aware that we treat him as a very much younger child in terms of what we do for him. I've tried to make a list:

He can dress himself, except for socks, but we tend to dress him when in a rush (most of the time). He sometimes gets clothes the wrong way round or inside out. He is much less willing to dress himself at home than school (where he is generally more independent because they're much better at encouraging it). He likes to choose his own clothes, but I usually do it because his choices aren't always appropriate for the weather!

We wash him and clean his teeth, though he is learning to dry himself.

We make all his meals, snacks and drinks. He can spread bread very awkwardly but finds it difficult to put pressure on a knife ( his fine motor skills are very delayed). He feeds himself ( using a fork if we insist, fingers if we're not watching).

We clear up after him, though he will put things in the bin if asked.

He is independent with toileting and wipes his own bottom well most of the time, though won't wash his hands unless made to.

Would be very interested to know what your children can/ will do. I know we should encourage him to do more for himself and it would be good to have a comparision.
TIA

DS is 5.5.

He cant dress himself. He can take off his coat just about and undo the velcro of his shoes but thats it.

He cant use a spoon, wont even try with a fork/knife.

If he washed his face he only ever dabs his mouth. He will clean his teeth but only the front ones, we do the rest. He is still in nappies. He doesnt wash himself or brush his hair.

Can ride a scooter but not a bike.

I get all his snacks, meals and drinks. The most he can do is bring me the crisp packet when he wants a bag (which is massive progress for us :))

He odes carry his own bookbag to school, and tidies his books (which are his favourite thing) into a stack when its time to go to bed.

Thats depressing - we have been focussing on his language so much his self-care is totally lacking. We will have to work on that.

It is depressing, when you see it written down isnt it!

I'd forgotten about not being able to ride a bike or open a crisp packet or unscrew a lid.

and just yesterday he ran straight into the road, when another boy from school said 'it', he thought the boy was chasing him. I thought he was pretty road aware.

But he does change out of his school uniform the minute he walks through the door without prompting, into his pj's and kind of attempt to fold his uniform into an untidy pile at least!

my DS is 6 and has fairly severe ASD. He can:

• use knife, fork, spoon, though he'll use his fingers if we don't make him
• spread butter/jam/etc on bread, cut food up with a knife
• lay the table and clear his plate after dinner (he'll try to wash it too, which makes a huge mess), help put dishes away
• can get himself dressed mostly (struggles with zips and socks) but only if someone stands over him. He can do up buttons no problem.
• can put his shoes and coat on, shoes sometimes on the right feet
• use three-wheeled scooter, bike with stabilisers
• as of last week, paddle with armbands in the pool out of his depth! (go DS! he was terrified of swimming at first)
• he's still in pullups, but he can do wees on the toilet now and wash his hands after
• he can sort of wash himself in the bath and dry himself afterwards, but not very well. (hair washing is a complete nightmare...)
• get himself in and out of carseat (not doing seatbelts, though)

DS2 (12) HF ASD.

He can dress himself, including buttons.

Wipes after the toilet using toilet paper and one toddler flushable wipe. Flushes and washes his hands. Still has 'skid marks from hell!'

Can ride a bike, learnt at about 7, but not well and doesn't enjoy it.

Micro scooters really well.

Can swim but not elegantly.

Can make himself a squash.

Catches the school bus with his brother, but not exactly public transport, has got on the wrong one once, but that's another story...

Very careful crossing roads, will actually walk further to cross at the lights, quite rule bound.

Will wash his own hair in the bath.

Can't do hot drinks.

Can't do shoelaces, still in Velcro or curly elastic laces.

Can't tie his tie unless I hold the knot.

Won't use a tissue, still uses his sleeve. (yuk)

Uses a fork or spoon under protest, can't cut with a knife. Will help himself to cereal and milk from the fridge but I put out a bowl and spoon.

Doesn't do 'please' or 'thank you' with anyone unless reminded.

I think I mother him too much, I've just got into the habit of doing it for him.

If it helps people realise that I'm not being smug, I can list all the things he couldn't cope with when he was 8;
including being very aggressive to other children,
unable to cut up his own food,
wiped his mucky hands on his clothes,
no awareness of time or stranger danger, or sense of cold or ability to assess a risk
couldn't cope with talking to shop assistants and asking for any sort of information,
could barely read,
stripped off to his underwear as soon as he got home and it took a year to get him to compromise on pj bottoms,
bizarre ability to eat and drink things that would sicken another person, like neat squash and 1lb of icing sugar...

Oh yes, I remember the days. Vicarinatutu and WetAugust have been mates for a very long time and remember some of the very challenging days long ago.
That's where our wine bucket came from, some days a glass just wasn't enough.
Now I look at my boy and I'm so proud of him, he's made so much effort over the years and come so far.

didnt really think of my ds as severe (nobodys ever said) but at almost 10yrs he cant do much of the stuff that many of the 6 yr olds on here can manage
ASD can make for a jumbled up development cant it! :)

Dd1 (8) with Aspergers
-can dress herself but sometimes needs help with socks.
-can bath herself but needs prompting and cant wash her hair.

• can make a drink or a snack/sandwich (poor motor skills)
• can clean her ears out with a wet wipe (she has very waxy ears so i have tauht her to do this)
• ccan go to the toilet, wipe but not always flush (needs prompting to wash hands)
• can feed the dog (with a liitle help), tip dry dog food into a bowl.
• can shut the curtains at bed time.

-cant ride a bike
-cant brush her hair
-cant use a knife and fork (can use a spoon)
-cant do up shoe laces

• needs lots of prompting to tidy up

I work in a class of 8 students with severe ASD or severe Global Developmental Delay + Mild or Severe Learning Difficulties. 5 are pre-verbal. 1 has a reasonable use of makaton. 2 have limited speech 1 or 2 word phrases.
We have

Toileting
2 toilet trained out of 8, they will wash their hands. Will ask to go to the toilet.
6 in pads, most of whom will use the toilet if you sit them on it at the right time but give no conscious communicative sign of when that time is (We have learnt roughly what time of the day they go.) They will try and escape without washing their hands :)
2 of the padded 6 (1 boy and 1 girl) will urinate on the floor if you're not paying attention.

Personal Hygiene
1 can brush her teeth fairly well herself, she can also ask for a tissue and go and get one when asked to. The others will not wipe their own faces etc.
2 can brush their teeth...averagely...
3 will let you brush their teeth for them.
2 really do not like having their teeth brushed but we are working on it.

1 has cane rowed hair but loves 'brushing' it with a soft brush.
1 loves having her long hair brushed but cannot do it herself yet.
3 will tolerate having hair brushed reasonably well (but 2 of those of boys with very short hair)
2 will tolerate having hair brushed but will complain a lot.
1 really does not like having her hair brushed

Eating
6 can feed themselves (2 with a knife and fork, 1 with a spoon, 3 eat a packed lunch with their hands(
2 need feeding by an adult (due to issues with throwing forks etc around the room)

Dressing
1 will take her own shoes and sock/tights off when asked. Roll her sleeves up etc. Shows no awareness of skirt tucked into tights issues yet.
1 will take shoes and socks off with repeated verbal prompts.
4 will offer a foot when asked to remove shoe or sock.
2 do not help with the removal of shoes or socks.

Road Safety
2 are sensible by the roads and can be trusted to walk on the inside of the pavement alongside an adult.
4 will walk sensibly when holding hands or linking arms.
2 show no awareness of where the pavement ends and road begins, will bolt given the chance.

DD is 5.5 and can't do anything independently except eat with a spoon. she is more like a toddler though and has severe motor planning issues

D'oh. Should probably have added our students are between 12 and 15.

Wow - thanks for all these responses. Really interesting to read. Have started our 'self-help' programme with DS - getting him to make his own snack, bring his plate out to the kitchen and put rubbish in the bin. So far so good, though when I asked him to take his plate to the kitchen this evening I found it in the bin later, so some work still needed....

DS is nearly 14, and can manage his own personal hygiene with direction. He is physically capapble of making a cup of tea / meal etc, but needs way more supervision than his peers as he would get distracted and let things burn / forget to use oven gloves etc.

A lot of his friends go into town for the day or stay home while parents are out, or babysit for siblings but DS cannot be left alone / unsupervised for any long periods of time or he would burn the house down / blow it up. In fact I would trust his 8 year old sister to babysit him more than the other way round.

He was a late talker (4) but apart from that and his reluctance to play he wasn't noticeably different to his peers at a young age. Gradually the difference between him and his NT friends has become more pronounced. I would say emotionally he is about 9.

He still needs an awful lot of support to get things - you know, the kind of thing that NT people intuitively know. He often needs someone to explain things to him / explain apologise to other people when he inadvertently insults them with his blistering honesty

Oh I forgot when I was writing the OP. Ds2 can turn on a computer, use a mouse, search a bookmarks menu and navigate around Youtube at lightning speed. Can't cut a slice of bread in half though...

Just reading back on all these posts and I noticed a few of you have posted concern about where your dc's are in terms of independence and that you've just realised that it was an area you've not really concentrated on. I just want to say there is no right or wrong answer here if you've concentrated on social skills, SALT, battling schools or any of the other myriad of trials we go through to help our little ones, then that is exactly what you should have been doing at that time because that was the most prevalent issue at the time. I was reading through and for a minute I was like holy shit I've never asked ds to make his own sandwich - he can get his snacks but I've never made him do more! Then I put my sensible head on and realised actually the biggest lesson from post (and it's a good one OP, very enlighting) is that my ds can with help and support do these things. So instead of breaking out the whip to beat myself for missing something I'm going to use this to work more on ds independence. So before any of you start breaking out your own whips of guilt, take a minute to think about how much your dc have achieved so far and that you got them there - and now we have a new benchmark to work to.
Fallen - do you want a job!

I think you also have to look at where your child is heading tbh. I know that the most likely outcome for ds1 is that he will need 24 hour support and that he will never be able to walk down the road alone.

Therefore for him the most important areas to teach are communication and behaviour, and that is what we have always focussed on. If he learns to read (he can a bit I think) then great - but mainly I think great because with increased literacy typing becomes a further potential communication aid, but literacy is not for us a key skill. Using his talker is, so we work on that. And queuing. As his inability to wait has a more profound effect on his life than anything else at the moment really.

Likewise dressing himself - yes it's great that he can, and if we arrange his clothes he can be pretty self sufficient - although he might need to be told to do out, but it's more important that he doesn't have challenging behaviour than he can dress himself. IYSWIM

So what I mean is that I look at what is limiting ds1's life, and what has the potential to limit his life in the future. The big one is behaviours, if he starts punching carers then we have a problem on our hands and options for his future are limited. Along with that is independent communication. Because with that he can start to choose his own life. The mumsnetter donated talker is making a massive difference with that because finally he can tell us a much wider range of things. With PECS, or tapping which we used previously we selected what he talked about. With the talker he has a much wider choice. So for example the other day he was able to tell us he was upset because the next door neighbour hadn't hung her washing out. I just would never have provided that as an option to talk about, would never have guessed and so would never have understood why he was being challenging. He told me using the talker, we discussed it, then it was done and dusted and fine - he was calm.

Very similar to fallen's boy. Ds is 13, AS/ADHD and increasingly independent, but that's largely down to home education (we can focus more on personal development and reduce the academic curriculum) and medication for his ADHD which helps him to focus. It gives him the clarity to grasp strategies for self-help that he simply couldn't manage before.

Absolutely horrible to be around between 7-9, described by his head teacher as 'the most violent child with AS I've ever known', impossible to manage or engage with. He functioned at the age of a much younger child because you just couldn't teach him anything as he was in a constant rage.

Now he gets bus/Metro into town by himself to go to various clubs and activities, starting to manage his own workload, and has been taking care of personal hygiene for several years (albeit on 'boy' level ). He does a lot of household tasks too, like laundry, emptying the bin, hoovering etc and can make himself snacks.

A huge amount of work involved though - none of it happened by chance. I'm knackered just thinking about the effort it's taken .

Fantastic streaky!

Have a nearly 15 year old ds.
He's doing ok I think . I would still say he is about 3 years behind compared to peers ... So functions more like a child of around 12.
He's good with hygiene...because its been a set routine for a long time. It's adding to it that has been a problem. Shaving ( he hit puberty big time about a year ago.. He is suddenly a fuzzy man) is the current thing. Hates the facial hair ... Can't do the weird sensation of electric shaver near his face. It's like he's 5 and we are having to sort out haircuts and nail-cutting all over again.
He walks to school with a friend.He goes to youth clubs by himself.
Independent though? No... Because he needs prompting for nearly everything in his life ( ie WHEN to go to school for example) and he rarely instigates anything independently.

Jimjams - DS2 will be in the same position, care-wise - and I completely agree with everything you've said about communication and choice. DS2 has just started to be more challenging, mainly because he gets angry, upset and frustrated about things he can't explain, and I am really trying to find a way to help him tell me what's wrong. SLT thinks we can do it via PECS, but I'm not so sure (for same reasons as you) - she also thinks he's not ready for a more complicated AAC device. She's the best one we've had for ages, so am going along with it for the moment (though she is insisting on going back to the very beginning with PECs, so I am having to bite my tongue quite hard!)

I have always said that if he could communicate better, he would be more independent by default. But working on the motor and planning skills are also very important for us, because his sequencing abilities are so poor (in most areas - NOT the computer!)

I was told that DC2 was not ready for a communication device, he uses PECS for food only, they argued he was not able in his annual review, the same review where they stated he could do things on the computer that they didn't even know was possible. They are starting a new programme for him in september. I would like the chance for him to learn to express himself before the frustration behaviours begin. I always worry that stratergies that are used are more about budget than success.

It is such a shame that the ACE centre in Oxford is shutting or I would really advise the 'moving on from PECS' workshop. They may run it in Manchester? It includes looking at why PECS stops working. DS1 started refusing PECS a few years ago. I would have thought PECS is too simple for your ds tbh.

I'd also really disagree with her that your ds is not ready for a more complicated communication device? Why on earth is she saying that? Your DS has a real motivation to communicate!

Have a look at LAMP sphil - it's been designed for autism, gets rid of a lot of the motor planning issues that are part of things like proloquo2go (which I'm sure is why ds1 didn't get on with it). They're running (free I think) workshops in various places in the UK. You would deal with the same rep as we do (she's a SALT), let me know if you want to talk to her and I'll introduce you.

UK LAMP info here including workshop dates

www.liberator.co.uk/resources/autism-aac-lamp

LAMP doesn't have to be done on a vantage btw, although it is ideal for it. It just needs for the symbols being used to produce the word to not move around all the time.