PDA and mainstream school - success stories??

[sleepworkmum]

DD9 is in Y4 of an all-through state school (reception to Y11), and is clearly ASD plus PDA. We are going through ND screening now. We've been facing increasingly frequent and violent school refusal since Y1, with about 70-80% attendance Y1-3. It escalated in Y4 and she hasn't been to school for more than three hours a day since December, and not in her actual class for more than an hour.

We are working with school, family services, therapists, every service under the sun to find an education set up that works for her. From experience and research I honestly believe we are heading for online/home school. DH (who would be facilitating that as I am the family breadwinner) is still very optimistic that we can work it out with her current school, at least until end of Y6.

From everything I've read here, on PDA Society, on all the podcasts and books, it sounds like only a very small fraction of PDA kids manage school. PDA Society estimates only 30% are in mainstream education, but I can't find any examples.

My question is this:

are there any parents of PDA kids in mainstream school (primary or secondary) out there who can share some wisdom, experience and insight?! Are your kids thriving or are they just white knuckling through the day? What kind of adaptations do they have? Are they managing to learn and develop?

I probably could have deleted the background and just kept the last three paragraphs. Sorry for the long post!

Have you read Phil Christie's book, Understanding Pathological Demand Avoidance Syndrome in Children? IMHO it's extemely good on school strategies and has an emphasis upon mainstream (in those situations where a child can be effectively supported).

Y7 is brutal, so good to have an opportunity for DCs's needs to be understood, and for some figuring out what works, personalised to them, before that transition. Which in practice probably requires an EHCP.

It's about compassion and individualised strategies, allowing DC to be heard within relationships of trust, understanding how to facilitate DC to remain within their tolerances, by reducing direct demands, increasing predictability, offering some (structured) choices, and safe space to retreat to with trusted and non-judgemental adults who can coregulate.

But also remember that DC's skills, inights and experiences will grow all the time.

The PDA Society are great, but personally, I exercise a degree of caution over the concept of PDA as it is a pathologising concept that bestows a permanent negative identity, which can be stigmatising and may obscure other important facets of an autistic profile. Autism with demand avoidant features or a pervasive drive for autonomy are less problematic descriptions. Plus, we need to be alive to the role of anxiety and trauma in creating controlling behaviours - assessment should consider these as they are frequent comorbidities (as being neurodiverse in a world which is not a comfortable fit with ones' cognitive profile/social understanding and orientation and communication preferences, is really bad for wellbeing and mental health).

"It's about compassion and individualised strategies, allowing DC to be heard within relationships of trust, understanding how to facilitate DC to remain within their tolerances, by reducing direct demands, increasing predictability, offering some (structured) choices, and safe space to retreat to with trusted and non-judgemental adults who can coregulate."

@Mohur this is exactly how I've been trying to phrase it. I'm going to get this printed on a tea towel or something!

Sadly I may be graduating to a tattoo on my or DC's forehead, but seriously, you are right, being able to name it really helps (and if you get to a good formulation, it can be recycled on a gazillion documents). It's then a question of applying the broken record technique until you get the provision consistently in place that delivers against this...

@Mohur‘s post is excellent.

IME, MS can work with the right school and staff who are willing to listen and think outside the box. The difficulty is finding, and keeping, that combination.

Does DD have an EHCP? If school doesn’t work out you don’t need to EHE if you don’t want to. You could look at EOTAS, which can, if appropriate, include online schooling, but it doesn’t have to.

@SearchingForSolitude , I hope we can find the magic combination, and I know the school and family services are fully on our side, despite paper thin resources. I know this is not many people's experience!

She doesn't have an EHCP yet. We're deciding on whether we want to go down that road and if it will actually be useful for us. EHE, EOTAS, ECHP and all of that is on the table and for another post for another day!

Right now I am really hoping for some first hand stories of PDA kids finding their happiness in mainstream school...

My DD's done OK in a private mainstream primary. Everything crossed for year 7 transition (she's year 6 now).

Things that have helped:

Nice staff who get here, especially one of the SENCOs
Lots of sport and music (she has ADHD as well - she needs to move/make noise)
Diagnosis helped school take us more seriously
The Headmistress is kind and very hands on
A good ratio of staff to students
Good behaviour and other parents who've been understanding when we've had the odd issue
Kind, familiar wraparound and holiday club leaders
DD is very sociable so she likes the social aspects of school

Problems:

Too much homework (although they've let her off nearly all of it where necessary)
She's taken a long time to trust the three SENCOs
Staff don't have much understanding/experience of SEN
Most students go on to schools that would be unsuitable for DD so not much advice on suitable schools
One parent was horrible to us pre diagnosis but we forgave him - almost certain he's ND himself now!
Expensive, OMG, having DD is the most expensive thing I ever did

IME MS is more likely to work with an EHCP because it allows you to name an appropriate school that you wouldn’t otherwise be eligible for a place at and the right support and training etc. can be included in there.

Nah - having spent a lot of cash trying to make it work with an EHCP and a 1 to 1 within independent sector. The 30% that "can" cope are either too young / less demands or not a text book pda child and would like that label onto their child. I think less than 5% can survive if that - as school is school and there isn't enough flex for a pda child to cope. School can never be a tailor made curriculum for a pda child and that is where the problem - it's far too strict and a pda child isn't always interested in certain topics. Too many lessons that clash with the pda mindset. Plus the equivalent NT child starts going further into the distance as they are doing all the lessons so gaps start to form especially around 10/11 years old when the pda child can't always complete all lessons 100%

You can get exceptional individual staff that understand the child. That are truly amazing and if the school was made of up 100% lovely staff that would be brilliant. However you can never get the whole school to be on board both teachers / heads / children so it would be very hard for it to work.

The pda child can "do school" for many years especially when under 10 years old with adding extra support / ehcps etc. However the older they get after 10 years old / the worse it gets with demands as work load increases. Then they just can't cope and burn out. Especially around yr 6-8 as the standard of work is great / demands are high.

There is not enough flexibility for pda children within schools - it's sad that schools don't work (especially of the child wants to be there to some degree) 😭

@seaisamazing, so have you ended up HSing?

My feeling is that the PDA is too prominent, and she is already is such extreme stress in Y4, that it's not helpful or healthy to keep trying. But DH is more hopeful that after a few week's break she will feel more able.

I feel like an EHCP will probably lead to a few tweaks that put huge strain on the school and barely moves the needle for her.

This is a dynamic situation in which DC's adapative skills and capacity will increase with age, and hopefully, everyone in their environment will also develop their knowledge and capability, and work to reduce environmental stressors.

I would be cautious about making any long term assumptions/decisions, or ascribing her current coping style as a permanent feature of self, rather than a consequence of situational anxiety, at her current stage of development. If you can acheive relational safety in an educational setting you may be surprised by what DC is capable of in the medium to long term (I know I have been). It's a long haul and you need a good team around you - sounds like you may already have this?

As before, The PDA Society do really great work, but there are other schools of thought about demand avoidant features of autism. (Personally I have found it helpful to read around the debate in the autism community about PDA as construct. I'm not sure where I come down within this debate - but understanding the sensitivities has helped me think about my child's needs).

@SearchingForSolitude did you have a positive experience with this route? Did it help you get DC in to the right setting?

@Phineyj this sounds like an ideal set up, well done. Yep, my husband has had to give up work entirely to support DD, so I am 100% with you on the cost. Do you have a plan for secondary yet?

Although I have 2 DC with comprehensive EHCPs which have ensured they receive all the provision they require (1 with EOTAS and 1 currently in a very supportive MS with a bespoke timetable/AP) they don’t have PDA. However, I have supported other parents with DC with PDA to successfully secure the appropriate provision and placement via an EHCP, which has ensured MS has worked/is working for them, at least for now.

It doesn’t work for all (I have also supported parents of DC with PDA to get EOTAS when a school of any type is inappropriate) but for those school can work for or those who want to be in school IMO the placement is more likely to breakdown without the correct provision and setting, which is more likely to happen without an EHCP.

An EHCP that only provided ‘a few tweaks’, whether in MS, SS or EOTAS, would be wholly inadequate.

@sleepworkmum I'm having to send her to my own school! It's not perfect but at least I know it's well run and staff are kind.

I have a low level of trust in the system.

Mohur, you are the first person I have heard voice the views that you have on PDA. I have to say I agree, after previously believing my child had PDA. Now he has moved to an environment that suits him better, and his anxiety has reduced, the label doesn’t fit anymore.

OP, have you considered special schools?

@BasementJs we are looking at SS but I dont know if this will be the right fit or if she would meet the criteria. ND screening and EHCP would help us understand that better. Wonderful that DS found calm and a better environment. Anxiety is definitely a huge driver of DDs refusal. The PDA Society stuff also doesn’t sit entirely well with me, it feels very extreme. I just take what feels helpful.

@SearchingForSolitude fully agree

@Mohur I also liked the way you expressed yourself. You articulated something I also feel.

I worked with a student with PDA in a mainstream school who could not access education during years 7-9. They are managing GCSEs now. It's not easy at all but some schools do manage it.

How are you getting on OP x