Dd, autism and cake - Thread 2

[bendmeoverbackwards]

I had no idea that my first thread would fill up and I am in awe and overwhelmed at the amount of support.

I am going to re-read all the responses and make a plan. Thank you, this has been eye opening.

And it's most effective when implemented early enough in terms of child development. Autistic girls are struggling more because they tend to get diagnosed much later

This seems optimistic and a bit simplistic to me. My experience with girls on the spectrum is that things get difficult as the social demands increase but that there are two absolutely horrific periods - late primary and mid high school, at around 11/12 and 14 years respectively. I agree it’s worse for girls who haven’t been diagnosed but it can still very very challenging for those who are, even with strategies and support.

I know girls who have had early diagnoses and high quality therapy (often free in Aus, if on the NDIS) and things have been pretty good until mid high school when everything has come crashing down. Those who take a hard-core PDA approach then seem to spend the next few years in their rooms, sometimes drawing but more often doom-scrolling. The girls who get through are those whose schools do reduce some of the demand but still have some expectations of them. Things often get better by year 10 in Aus - by then the academic structure changes and the social groups have shifted around.

I completely agree with this. Avoidant behaviour perpetuates and worsens anxiety. Then add in the children with PDA are allowed by their parents to stay home and miss school, they then miss out on crucial academic and social. They then are so far behind their peers that the anxiety worsens and it becomes a vicious cycle.

I think the poster who managed this by reducing some demands but insisting on school and social interactions was spot on.

There are people posting from inpatient psych units with competitive self harm and ED behaviours and if you watch one it will serve you up more and more. By agreeing to watch them you are condoning that so I fully agree that you should stop

I think some people underestimate the harm of the tik tok algorithm.

Im in Aus and it’s been a pretty chilled day - my older two have gone back to uni so I only have my younger two at home. I’m obviously back on a screen now but it’s late afternoon and I’ve also swam 2km, done some washing, been to the optometrist, waited for DD3 while she tried on every frame in the shop, bought sushi for lunch, done the dishes after she baked, fed cats. It’s been a low-demand day overall but I’ve achieved a few things and I feel mentally even, I suppose.

However, if I’d spent 8 hours scrolling tik tok watching people talk about killing themselves, I’d be irritable, anxious and thinking about suicide and death. Doing that all day, every day, would destroy my mental well-being.

"Allowed by their parents"!

That really oversimplifies a situation where you are potentially faced with physically dragging a child into school if they are avoidant enough. That's awful for all parties concerned and impossible once the child's too big for you to pick up (ours was physically violent to us when disregulated up to the age of about 12).

Fortunately she liked her primary school a great deal (so only occasionally school refused, mostly around lockdown issues) and I went to huge trouble to find a suitable secondary (two years of paperwork and tribunals and reports to get it named in an EHCP).

I knew it was the right school for her (I teach there) when we took a PDA student into year 10 and managed to get her to 60% attendance. That might not sound much but she had been unable to attend for all but a few days of KS3. She left us with some GCSEs, some work experience, she completed a DofE bronze expedition, and more importantly, she'd made some friends.

Please don't trivialise the challenges of PDA autism. It can be awful to deal with and people judge you, including friends and family.

@Shrinkhole our caseworker told me yesterday that the thing that swung them agreeing to provide dd with alternative provision was that I'd very carefully couched the request as a temporary fix to help dd reintegrate fully into mainstream. He did say that he believes parents are too quick to jump to asking for permanent, full time alternative provision. In dd's case she's very socially motivated and self aware, she wants to return to school, and we believe it's the right/ best place for her with the right support in place (although that is another story...). Now that she has recovered sufficiently from burnout, she will have a home tutor mixed with online learning initially, but with a view to longer term full reintegration (6-12 week plan). She's kept in touch with school via visits throughout, on her better days.

I think there's a considerable cliff edge in terms of support when a child becomes an adult, particularly if they don't have an ehcp that follows them into adulthood. This is at least partly why the welfare bill has increased so significantly and 18/ 19 year olds (and older) remain at home not functioning.

When you read between the lines, I don't think PDA informed approaches (when implemented correctly) and CBT are too far removed from one another. The argument tends to be around whether PDA is a distinct syndrome, or a sliding scale, and therefore the starting premise is slightly different.

In practice, many families find starting with PDA-informed (low demand) and then gently layering in CBT-style reflection later works better than starting with structure. This is where we're at.

I genuinely don't think that an immediate leap into structure and expectations and demands is going to work with op's dd, though that has to be the end goal. Note also that 'low demand initially' doesn't mean 'no demand forever'.

For the record, I do also support tighter restrictions on social media for teens for all the reasons stated. Though my own dd is creative and has been editing her own dance/ craft videos which seems to have helped her recover.

https://www.autism.org.uk/advice-and-guidance/behaviour/demand-avoidance#:~:text=Although%20demand%20avoidance%2C%20including%20the,of%20Newson's%20theory%20in%20clinical

Surely NAS are a reliable source and they seem pretty on the fence noting that PDA is not an official
diagnosis and there is no evidence base for low demand strategies as against anything else. The research on the PDA soc website section is all just surveys of people and parents who self identify with PDA and are heavily invested in it. The research I’d like to see is comparison of the psychological characteristics of those with and without it to see if it really is a distinct entity and an RCT of different approaches otherwise I don’t accept that we ‘know’ that any of these strategies work except in the short term. If an RCT isn’t likely at least we need an unbiased outcomes survey of what the long term outcomes are.

I was going to say similar. A charity can by set up by anybody, and often what they publish is their opinion. This is not research, nor is it always reliable or accurate. Charities are a good way of accessing support, but that's all they are. Often it's the same people who are on social media support groups who set then up.

We saw this with Mermaids over the trans issue. They presented their (very damaging, none-evidenced based) opinions as facts and chaos ensued.

Has your daughter completely recovered, as in is back at school (if school refusing) and doing all the things she should be doing? Or is the recovery you mean that she seems happier not being at school but editing her videos.

Often people seem to mean recovery as 'seems much happier and less anxious now she is sat in her room 'self-regulating' on tiktok' - this isn't recovery, this is an ongoing severe issue, like the situation the Op is in.

OP's daughter hasn't recovered because she is happier alone in her room, I would say she is in crisis and OP is trying to find a way to help her out of it, which will likely mean her anxiety increases in the short term

The PDA Society itself acknowledges that more research is needed, and that there are different schools of thought. Research into newer theories has to begin somewhere, and I don't think we should be completely disregarding the lived experiences of those (numerous) for whom it seems to have worked.

I guess it's what you mean by worked. A low demand approach hasn't worked for OP, has it? Unless you count her daughter not having to experience any anxiety or discomfort as worked. That was the point if the link I shared - removing any demands or expectations from children is damaging in the long term, as they don't learn how to manage discomfort or demands.

What is your daughters current situation?

My daughter is 28 now and was diagnosed aged 7. She is also adopted and has a whole history of early trauma. We went through the whole range of assessments and suggested diagnoses, including attachment disorder, but PDA made most sense to me - and this was back in 2006 when PDA was relatively unknown.

My daughter had all the PDA symptoms, not just the demand avoidance but also the role playing, fear of people in character costumes (Disney land Paris was a nightmare) and lots of asd traits. She was incredibly outwardly sociable (though it was all an act) and no one ever believed she was autistic, and this is typical of PDA and another aspect of role playing - in fact she was way too, inappropriately sociable, and she would talk to adults like they were her peers. She had no friends though and relationships with other children were spiralling.

She was in the smaller group of PDA kids who present under the radar at school. She basically did no work but was so seemingly cooperative and no trouble, so teachers left her alone. Then she would explode when she came home.

She was doing zero work at school - i couldn't see how she could ever manage secondary. I therefore started looking into specialist provision and I got her a then Statement in year 6 and a place at a speech and language independent school. She was collected by minibus from the house and dropped off each day. And she tolerated this. Im not sure what would have happened otherwise.

Then for post 16 she went to a tiny alternative provision for nervous students. We tried to visit the local 6th form college but she bolted the minute we got inside.

So she stayed there for 2 years, then the local NEET scheme got her an apprenticeship and she has been working ever since.

She is able to do more and more as she matures and sees the intrinsic benefit - she is currently learning to drive forcexample, but that's only been possible in the last few months.

She definitely is on the autistic spectrum and I find that PDA is the best explanation for her difficulties. But it involves much more than demand avoidance. It's the role playing, fear of people in costumes, superficial sociability....I'm not sure that the OP's daughter has any of this.

I very much agree @nolongersurprised. I think op would be horrified by content her dd has been accessing, screen time and the way algorithm works serving up more of the same. That suicide clip will have been one of hundreds viewed. It’s not good for anyone’s mental health or wellbeing to watch content like that for hours day in day out.
No fresh air or exercise, no purpose or structure and just hours doom scrolling day in day out anyone diagnosis or not would feel depressed, anxious and lethargic.
I think single best thing you can do is stop paying for and facilitating the social media access.

This is lovely to read.

I hadn't come cross the fear of people in constumes before. Is that a PDA thing?

I'm no expert, but I believe there is considerable in-fighting within the professional autistic community regarding PDA (probably a bad way to phrase it but people with a professional interest rather than just a personal one).

All I can say is that the PDA Society is an absolute lifeline for families like mine where our children's presentation of autism is different to the main. I have also (as I said in my previous post) come across it as as a teacher.

Some children really are strikingly different and don't respond to adults and structures in the way anyone expects.

PDA was originally based on a research study (quite a recent one):

History of PDA research - PDA Society https://share.google/72FWFYGQemm2Lf5iJ

Having said that, I don’t think the OP's daughter is necessarily PDA. I think her family have been very kind and very indulgent and she has got stuck.

My younger sister got stuck/failed to launch for quite a few years as a young adult but she has now in her 50s got a successful marriage and two lovely nearly grown up children, a house she owns and while not exactly a career, she did eventually manage to get into work.

She's also highly anxious and demand avoidant, but she gets by. It just took much much longer than the norm.

I think quite a lot of kids are terrified of "man dressed up"! DD absolutely freaked at Dover Castle once on seeing an actor dressed as Henry II (with great presence of mind, he quipped "My children cry and run away when they see me, too!") and eldest DNiece (probably autistic but my sister will have no discussion of additional needs ever) was always petrified of models of people in museums. DD once made me run the whole length of a cross channel ferry, for fear of "The bear"! (Yep, a man dressed up).

With autistic children it is an inability to understand the concept of the characterr. Small children are often scared of clowns, because they don't understand, but as they grow up they do understand - they might not like them but they understand the concept.

With autism it's different - they don't understand and they never do, even though you can teach them the appropriate response.

With PDA, some kids are apparently freaked out by pretend play food, like plastic vegetables.

A low demand approach hasn't worked for OP, has it?

@Terfymcnamechange

It has to a tiny agree. Some examples - for years I was trying to encourage dd to get involved with cooking with my help. She refused. Then last year when I wasn’t even thinking about it, she appeared in the kitchen when I was prepping dinner wanting to help and I showed her how to peel and chop potatoes, carrots and onions. She’s done this a few times since.

I was away with dh for my birthday in January. When we got home, dd had baked me a cake from scratch. This was a while after she said she ‘couldn’t’ cook a frozen pizza even with clear instructions. I was delighted and utterly amazed. She was up till 2am decorating it and cleaned the surfaces afterwards.

Another example - DD’s en suite bathroom. We’ve had so many rows about the cleaning of it, she just refused all the options. And I know she feels uncomfortable about people in her room, doesn’t like her things touched etc. Then a few weeks ago, she agreed to the cleaner coming in to clean it. It sounds like a really tiny trivial thing but it was a big deal to her.

These things show that when the pressure is off, she will take small steps. And this explains why I’ve done the ‘low demand’ for so long because just occasionally I can see glimmer of hope.

Yes I was terrified of people in costume. Morris dancers, the Hare Krishna people who would go through the streets ringing bells, men in drag, panto dames etc. I was surprised that my children grew up with no such fears as those fears were a big part of my childhood and well into teens.

These are some tiny crumbs to live on for 2.5 years though. Progress would be if she allowed the bathroom to be cleaned every week or if she built up to cooking dinner once or twice a week. Consistent progress towards a goal even if slow not very occasional flashes. This would not be enough to convince me that an approach was ‘working’

Yes. I think you’re placing a bit too much weight on these glimmers of hope in an effort to avoid meltdowns. My experience has been that sometimes trying too hard to avoid meltdown is counterproductive. The child needs to learn to experience feelings and cope with them. If they refuse the choice of cleaning the bathroom or having the cleaner go in, you simply send the cleaner in. She can then choose to clean it herself in future or allow the cleaner. What you are doing is allowing to hold you hostage and you’re reinforcing the idea that manipulation and refusal are effective tactics. This is tricky as it can shade too quickly into tough love and “don’t let them rule the roost!” but at the same time, if a child is not allowed to experience distress they will not develop the skills for distress tolerance.

PDA is very complicated and my personal opinion is that it is being muddled as people are too quick to suggest PDA whenever a child resists a demand. There are autistic children who have situational demand avoidance because the specific demand is a stressor, and there are techniques to deal with that, but it isn’t PDA. The line between PDA and anxious overwhelm currently isn’t properly defined.

It’s the choices that are on the table isn’t it? You can still give a choice; clean it yourself or let the cleaner in. But the choice leave it in a disgusting state should not be on the table as that is not an acceptable choice.

I agree.

There is a big difference between chopping some vegetables as a one off because you fancy it, and chopping the veegtables as part of an expected job to cook the family dinner once a week. True improvement would be DD starting to accept some small demands placed upon her, and learning how to do things that she doesn't really feel like doing and living with that discomfort, such as making a meal for the family ince a week. Doing an optional activity every so often instead of watching self harm videos isn't really recovery.

I think what DD is saying when she says she can't, is I don't want to and I don't know how to do things I don't want to do anymore.

Am I right in thinking that OP's DD hasn't been diagnosed with PDA? I have to admit PDA wasn't the first condition I thought of when I first read OP's posts.

A no demand approach with an indefinite, unstaged plan/ goal hasn't worked, no I'd agree. That's not a criticism by the way, it's an acknowledgement of how impossible it can feel to try to get someone who has fallen so deeply to re-engage.

I understand why you're apparently so skeptical, and while I've said i didn't really want to derail the thread with my dd's progress, you have asked a couple of times, so I'll respond.

Her progress has been real, meaningful and significant. This looks like, in real terms:

• Re-engagement with people and activities she previously enjoyed seeing and doing but since burnout has not

• Consistent interaction with people and surrounding environment, improved toleration of structure and forward planning

• Ability to problem solve, with and without our support

• Increased awareness of her own needs and use of special interests to provide herself with windows to rebuild stronger capacity

• Increased capacity to take on increased social and cognitive load

• Actively seeking opportunities to spend time with others

• Fewer meltdowns, with less intensity, and faster recovery in between (and initiation of repair with others)

• Vastly improved tolerance to everyday demands, increasing tolerance to heavier (longer term) demands

• Putting forward her ideas on 'what works' for her, ability to work with us, and other professionals, on what a phased return to school might look like

• Returning to both creative (painting, drawing, writing stories, doing magic) and physical activities (swimming, walking, cycling, gymnastics).

In short, not bad for a 9yo who 2-3 months ago was lying in complete darkness under her bunk bed, barely able to do the basics any more (eat, talk, dress). I think we're probably doing something right by her.

Before you say "ah, but she's not back at school though yet is she?" She went through a period of similar burnout 3 years ago, we successfully got her back to school back then and she thrived (with an ehcp) for 3 years until her latest shutdown. I have no doubt that we'll achieve the same this time around too (though I'll admit that at points it's felt very low).

Her recovery has now transitioned from spiky waves (small improvement, wobble, slight temporary regression, another improvement) to a more linear trajectory (old skills and abilities returning every day). It's taken 4.5 months to get to this stage.

Yes I suppose so. I’ve been influenced by a FB support group who advises celebrating small wins, no matter how tiny. And I thought that in time that the wins would become bigger. Dd does occasionally do some dinner prep but it’s very much on her terms. And last night she refused because ‘I’d been mean to her’ (No surprises there). I told her that doing some regular chores is not optional or conditional on other factors.

But I am prepared for her to kick off because I’m being firmer. Last night she got into a row with dh because he ‘butted in’ to a conversation I was having with her. I fought dh’s corner and explained that if people are in a room together, everyone is allowed to make a comment if they so wish. She stormed off slamming the door behind her.