Help with young autistic female child.

[tuliprosedaffodil]

Hello,

I haven't posted this on SEN because it's so quiet so was hoping I'd get more responses on here. Would be really useful to get input from other parents with children on the autism spectrum.

My daughter is just five. She was diagnosed at three. She is very cognitively able, has a vast vocabulary and advanced academically (so far, she is only in Reception - I mean she is already reading and writing fluently and clearly, retains knowledge, is working at more of a KS1 level for most subjects not that she's a mini Einstein in the making of that makes sense).

She has an EHCP and 1-1 support at school because she has struggled to cope with her peers, has meltdowns when she becomes overwhelmed, has sensory difficulties. All in all school has gone better than expected, with a high level of adult support she's even started to make friendships. To give an idea of the level of support she has we received mid-rate DLA for her and I receive carers allowance.

We are having terrible trouble at home though. She's holding it together at school and exploding at home. So far so normal really, I can deal with the meltdowns I'm used to it now and see them coming a mile off.

But what I am finding really hard to deal with is - and I hesitate to call it this because it sounds horrible - her manipulative streak. I should say here that were really conscious of the language we use around and to her, she forgets nothing and takes things really to heart so we don't tell her that she's a bad or naughty girl for example. We talk about good or bad choices instead.

When I say manipulative I will give you an example, but this isn't the first time she's said things like this but not to this extreme. Today, she has been awkward, deliberately back chatting, not listening - more typical five year old behaviour. After she's been told repeatedly not to mess around in the bath today when she got out I said 'oh dear it's a shame but if we can't listen to mummy and daddy then we're going to have to stop doing nice things like going to the park I'm afraid'. I also explained (because she always needs an explanation) again about safety, why we don't mess around in the bath etc.

She sat quietly whilst I dried her hair and said after 'ok mummy. I'm not going to listen so I guess I won't play with any toys anymore, I won't see Grandma, and I won't go to the park'. I agreed and said it was her choice but we need to see some better behaviour if we're going to have or do nice fun things.

Then she said in a sad voice 'Well mummy I think I'll go and live in another house. On my own, with no family and no one to love me. I will stop loving you all too and then no one will miss me'.

I was pretty gobsmacked at that. I mean she is only just five years old. How on earth has she even got that into her head? I told her calmly that would be a terrible shame, that if she wasn't here we'd miss her and that of course we would always love her no matter what.

We had a rather circular conversation for a while, with me just repeating that we always loved her no matter what and her saying that she wanted to live on her own with no one loving her. In the end, I managed to distract her, and she snapped out of it, we settled down and she seemed fine again after stories, cuddles etc. She went to sleep fine.

But I'm left here scratching my head. I mean WTF?

Anyone got any wise words on how to deal with this? She's in a stable, loving, supportive home with me, her Dad and her little sister. There is no conflict around her, she has everything she could need or want (she's not spoilt, but all needs met with some treats). I'm a SAHM/her carer, she has my full care.

If your dd is anything like mine was at that age, there was always an obsession with something. A particular teddy, tv programme or toy. A short, sharp removal of it was the only 'threat we needed. Always time limited. So "Stop messing about now or I'll put Teddy on the shelf for 15 minutes", that sort of thing. It was clear, concise and easy to do. And because the object really mattered to her it worked. DS who isn't autistic just laughed at this sort of threat. On the other hand he used to do emotional blackmail- I know you don't love me and I'll be sad - like a pro.

'oh dear it's a shame but if we can't listen to mummy and daddy then we're going to have to stop doing nice things like going to the park I'm afraid'

You need to think about what this sounds like to a child with ASD.
What does it literally mean ( if you take it literally like kids with ASD do) ?
No trips to the park EVER AGAIN?
That does sound like a harsh punishment for what is essentially a bit of silliness. No wonder she reacted the way she did.

You need to be very clear in the way you speak to her. Remember autistic children are very literal and can't do vague, they work in certainties and absolutes.

Lots of great responses already, esp on the literal interpretation of your words and her being verbally strong but still a 5yo (and probably younger) when it comes to emotions and understanding. I'm also wondering if you're somewhat worried that she will outsmart you sooner than you're comfortable with. I remember when my DC with ASD were 7/8 and thought they knew everything and were much better at running their (and my...) life than I was. They were so measured in their reasoning and convinced that things would be better with them in charge, it was difficult to hold my own. Looking back, it seems more like the toddler mindset of 'I am right, mummy is mean' but because of their eloquence it was hard to see that at the time. I was quite strict on letting them know that although they were very smart and were indeed very capable, I was still the adult with an adult brain and more experience, and therefore in charge until they were grownups. And that other grownups would back me up on this, however unfair that might feel to them. Although it didn't stop the back talking, it helped to maintain boundaries and now they are 11, they are actually more able to take direction. Simply because their reasoning has outgrown that toddler thinking of 'I am the only one that has anything useful to contribute'. They've grown up a bit and can now see that they are still some time away from being adults. We now laugh together about how stubborn they were when little and I'm bracing myself for the next stage of 'But now I DO know better than you' that will probably follow in a year or two.

Lots of food for thought for me here, thank you.

@PastMyBestBeforeDate Yes yes yes to having items that's she's obsessed with. The thing is, when the Ed Psych reviewed her last year she told us that we should never remove these treasured items as a punishment. When she was 3/4ish when she was gearing up for a meltdown she used to throw them away, kick them, stamp on them and say she didn't want them anymore (they're soft toys). When the EP heard that she said it was like she was punishing herself for her 'bad' feelings and that we needed to recognise that they are her comfort and security - to remove them would almost be completely concurring with her feelings that because she was feeling 'bad' she didn't deserve these things that she treasures so much. We do confiscate toys that aren't these treasured things (for snatching, for example) but she doesn't much care.

@depopsa Definitely an element of this too. My DD is whip-smart in some ways and I frequently have had to remind others (and myself) that just because it feels like you're speaking with an 8 year old because her vocab indicates a real maturity and intelligence, you're in fact dealing with a neurodiverse 5 year old whose understanding isn't in line with her years.
She also gets cross and often says 'Ugh Mummy why do you boss me around so much and tell me what to do?!'. I explain to her calmly that I'm a grown up, it's a mummy's job to teach her about good choices and not so good choices and to keep her safe. She normally stomps off muttering mutinously 'Huh. I am NOT a baby!'

And yet, when she's having a meltdown and she screams violently in my face, pushes me, tells me to go away and leave her forever, on the odd occasion that I've tried to leave the room in an effort to calm her saying 'ok darling I'll go and wait in the other room for you to calm down, come and find me when you're ready', she screams 'NO!', cries inconsolably and clings to me much like a frightened toddler would. She doesn't want me to leave (and I don't now), she desperately needs me to stay, she just can't handle her feelings. So now I just sit quietly and tolerate the screaming, I don't respond to it, until it passes. Poor love.

Have you looked at PDA presentation of ASD? What appears to be manipulative behaviour and explosive temper and the intelligence really stood out for me. Have look at the PDA society website and their behavioural management guidance. Our situation (with what sounds like a similar child) changed dramatically once we used specific PDA strategies. We pursued the PDA diagnosis after this. No exaggeration to say it has saved our family....

Oh yes @Grimbelina. She definitely has a PDA profile. It was picked up at diagnosis.

Have you tried the PDA strategies? DH and I had a coach for a few months to help us (also good at getting us on the same page). Very happy to share details if they were useful... but the PDA society has great info.

@Grimbelina That would be great if you found PM me the details, I'm always looking for new ways to learn and help DD. I will have another read of the PDA website, it's been a while since I had a good look at it.

Hmm I see the Ed Psych's point but it was only ever for a short defined period and she always had it back promptly and was warned so she could avert it. I guess if we'd done it after the fact so she didn't have control and made the return conditional on something then it could have been different. We also made sure that was the only punishment so we'd behave normally and not be cross.
She's 14 now and doesn't seem to have been scarred for life by it :) We didn't realise she was autistic at that point mind you!

Welcome to world! My ds is 26yo and has asd and can still argue black is white and convince you it's true

He also never responded to consequences. To the point he'd do why he knew she shouldn't and then go and get his iPad and give it to you as that was the consequence!

It's about learning to understand how their minds work and learning to explain things in a way they understand.

And because they learn rules and consequences make them relevant.

Splashing in bath means showers in future. That makes sense and is logical.

Also remember that they may have very adult language but that's their expressive language. The receptive language is probability quite delayed and so they aren't really understanding the nuances of what your saying but picking out key words to make sense of it.

So her thinking what she's doing wrong is annoying you it's logical she'll live alone so she can't do that. It's quite possible that "no splashing" is too abstract.

The best bit of advice I had when talking to autistic people was "don't tell them what you don't want them to do - tell them what to do"

So no splashing means there's loads of others things they can do - they won't necessarily understand which of those is ok.
"We need to sit still in the bath so the water doesn't slide up and down" is a clear instruction.

I also got told not to say something won't happen if there's a statistical possibility it can. Instead say that it could happen, very unlikely to happen and only happens x times a year out of x amount of things etc.

Try not to think of her manipulating you. It's manipulative behaviour but it's about trying to control the environment to understand what's going on.

My ds is 16 not 26! It even said the right age as I posted

@itsgettingwierd

Welcome to world! My ds is 26yo and has asd and can still argue black is white and convince you it's true

He also never responded to consequences. To the point he'd do why he knew she shouldn't and then go and get his iPad and give it to you as that was the consequence!

It's about learning to understand how their minds work and learning to explain things in a way they understand.

And because they learn rules and consequences make them relevant.

Splashing in bath means showers in future. That makes sense and is logical.

Also remember that they may have very adult language but that's their expressive language. The receptive language is probability quite delayed and so they aren't really understanding the nuances of what your saying but picking out key words to make sense of it.

So her thinking what she's doing wrong is annoying you it's logical she'll live alone so she can't do that. It's quite possible that "no splashing" is too abstract.

The best bit of advice I had when talking to autistic people was "don't tell them what you don't want them to do - tell them what to do"

So no splashing means there's loads of others things they can do - they won't necessarily understand which of those is ok.
"We need to sit still in the bath so the water doesn't slide up and down" is a clear instruction.

I also got told not to say something won't happen if there's a statistical possibility it can. Instead say that it could happen, very unlikely to happen and only happens x times a year out of x amount of things etc.

Try not to think of her manipulating you. It's manipulative behaviour but it's about trying to control the environment to understand what's going on.

This....

I couldn't make her shower, she acts like it's raining acid on her, not warm water. Sensory perhaps or maybe just a strong dislike. Could certainly tell her messing around in the bath = no toys in it, quick wash then out rather than the nice playtime she usually has.

Our DD has only started showering in the last few months. We just got an adjustable shower head with a mist setting, she loves that because it’s gentle. She hates a power shower. I did too at that age, I remember hating showering and the feeling on my skin, it’s got better as I’ve got older.

Definitely think about your language. Do you know about the concept of neuro-linguistic programming? It’s the premise that the brain can’t compute the term “don’t”...so if I said “Don’t think about a blue tree” what pops in your head?! It’s takes some effort to modify language but it helps. For example instead of saying “Don’t wander off” I’d say “Please stay with me”. It definitely helps.

@PastMyBestBeforeDate

Hmm I see the Ed Psych's point but it was only ever for a short defined period and she always had it back promptly and was warned so she could avert it. I guess if we'd done it after the fact so she didn't have control and made the return conditional on something then it could have been different. We also made sure that was the only punishment so we'd behave normally and not be cross. She's 14 now and doesn't seem to have been scarred for life by it :) We didn't realise she was autistic at that point mind you!

I'm sure with a child who wasn't using those items as a security/comfort it'd work well! She had one thing that literally went everywhere with her (she still sleeps with it and has a square of identical fabric stitched into the inner cuff of all her school jumpers and tops) and if I'd ever taken that my god I dread to think what would've happened. I had to buy spares.

We were lucky to get an early diagnosis. She'd always been different, difficult from birth really. Very very high needs baby, screamed constantly, wouldn't breastfeed despite my best efforts, wouldn't sleep or would but only on me for nearly a year. Screamed whenever I took her anywhere unfamiliar or to things like toddler playgroups as a tot. Her amazing preschool at not quite three suggested to me gently that we have her assessed because of her tip toe walking and extreme reactions to her peers - she couldn't bear being around other children, she couldn't cope with noise, she needed a 1-1 support there. We took her to a private clinic first, had the ADOS, got a diagnosis of ASD with PDA and then also had to go through the whole process again with the NHS because our county council doesn't accept private diagnoses. The funny (or not really!) thing was one of the doctors from the private clinic also did her assessment for the NHS! What a waste of NHS time and money.

So we had both a private and NHS diagnosis by just over age three. I applied for an EHCP myself, got her an OT myself (because the county dragged their heels on it) and it went through first time the July before she started Reception last year. So luckily we've had no experience of having to go through CAHMS and delays etc. Good job because her teacher was telling me just for an initial visit from CAHMS now it's a two year wait. Horrible, all those children who desperately need help that can't access it.

I'm pretty much your DD thirty years on, from what you describe, and can only say that this:

"oh dear it's a shame but if we can't listen to mummy and daddy then we're going to have to stop doing nice things like going to the park I'm afraid"

would have upset and confused the fuck out of me at that age, and I'd have needed to find a way to protect myself against it in much the same way she did.

It's long and complicated, seemingly unrelated to what you were asking her to do, positioning yourself as both wanting and not wanting to stop going to the park (which would've been very confusing to me as a child), and sounds like a forever punishment framed as a consequence but with no explanation of the logical link to her current behaviour. Your pronoun use feels alienating and manipulative as well as very hard to parse and comprehend; using "we" to mean things that don't mean "we" — who's the "we" that needs to listen to mummy and daddy — does that include you? and why are you referring to yourself in the third person as "mummy"? Who's who? Argh… as an adult, of course, I get it, but swapping around pronouns and sometimes referring to yourself as "I" and other times as "mummy" would've confused me.

I'd have felt all het up and confused and maybe somewhat attacked, and might've responded by feeling a need to get away from everyone and everything that might produce this kind of complicated and difficult-to-navigate human interaction, and expressed that in the way your DD did. It's not manipulative, it's an "I can't cope with this" response.

Also, at that age, to me "listen" didn't necessarily imply "listen, and then also do the thing I'm being asked to do"

That really is so so helpful @HardDropper thanks for sharing. It's useful to hear it from your perspective and it makes perfect sense when you explain it like that.

I will avoid the 'we' usage too I can see how that wound be confusing.

And you know, often when I ask her to 'listen' she will say 'I am listening!'. She is I suppose. She's not doing though. So I will be more specific and clear in my instructions.

Thanks for not taking offence — I reread my post afterwards and thought "man, that sounds harsh" but I guess it was a consequence of me trying to peel away all the years of learning how to act non-autistic

"I am listening!" 😂😂😂 — I remember so many times saying that as a kid, and not getting why the person was accusing me of not listening just because I wasn't obeying… she'll learn your language eventually, it's just going to be a long haul

Zero offence taken honestly @HardDropper. Blunt is good! If I'm completely honest I share many many traits with DD, directness being one of them, which sometimes helps because I get why she is objecting to things (I definitely have sensory difficulties myself; with noise and food we both cannot bear conflicting/competing noises for example and certain textures) and there are other things. Rigidity and inflexibility most noticeably for me. An unexpected change of plans throws me off kilter for ages. Other times I feel that it makes it more difficult because I struggle to relate to NT people let alone DD with her many differences.

I have no idea if I too am on the autism spectrum because I've never felt that I'm struggling so much that I need to find out. I don't see what I would gain at my age (37). My mother is convinced I am - she says it's like looking in a mirror to the past. I don't ever recall struggling in the same social ways as DD does though. Who knows!

Being an academically advanced and verbally capable but socially and emotionally delayed child can be really difficult — it's a lot like the difficulties people describe when they have a very tall, older-looking child and others expect a standard of behaviour and level of ability that the child just isn't capable of.

There's an often-unspoken assumption that abilities will develop in step with one another, meaning that a child who, as in my case, can do algebra in the classroom but bites other children in the playground encounters frank confusion from others, as well as disapproval.

Your DD probably quite frequently comes up against expectations she can't meet, and is trying to operate in a world where the difficulty levels of the tasks she's presented with diverge wildly from the difficulty levels other people think those tasks have. A kid with average levels of ability in everything will be being challenged a bit academically, a bit socially, a bit at home, a bit at school, and won't receive undue praise for getting easy things right or excessive punishment for getting difficult things wrong. But an academically-capable autistic kid is in a world where the difficulty of a task for that child bears little relation to how difficult other people think it should be for you, making it hard to get a consistent sense of effort leading to reward, or of your own self-worth.

I was diagnosed in my mid 30s. Saw a MN thread and suddenly realised this could explain why I never quite fit in...the Tania Marshall screening tool might be helpful.

Could certainly tell her messing around in the bath = no toys in it, quick wash then out rather than the nice playtime she usually has.

Maybe it doesn't have to be a threat at all. What about a straightforward WHEN-THEN - "WHEN I have washed your hair THEN you can play with your toys"? Or she gets in the bath, then the boring washing bit gets done, then she can have fun messing about with her toys until plug-pulling time.

@ThePontiacBandit

I was diagnosed in my mid 30s. Saw a MN thread and suddenly realised this could explain why I never quite fit in...the Tania Marshall screening tool might be helpful.

Gosh, that screening tool/list is very enlightening isn't it. Wow. Thanks for sharing.