to ask about how/why your DC got a PDA diagnosis as a teen

[mamabun]

I've just tried to get ds who has both asd and adhd to complete a form given by psychiatrist to see if he fits PDA profile and he freaked out at the first question

i'd love to hear how/when/why anyone else's teen had PDA confirmed?
Did they manage school at all?
Did they get any qualifications or live independently?

It feels like the only option i have left with him is to give up effectively. It's really hard.

any tips welcome. posting here for the traffic obviously but happy to take on any stray trolls :)

Not diagnosed as teens (much younger) but I have 2 lovely boys aged 15 and 12, ASD, PDA and other diagnoses.

Both have an EHCP with full time 1-1 support. Eldest Yr 10 doing 7 GCSEs and on course to pass them all well.

Happy to answer any questions 😊

Mine didn't get a diagnosis, as she is not as bad at school. Tho this is partly because she only goes when she wants to. And quietly refuses to do things she doesn't want to.

It's at home that she is worse. She can be like it at school, but to a lesser extent.

I try for low demand, and its much easier now that I can leave her in the house/not place demands.

Fluoxetine seems to be helping. Less anxiety, so she is less resistant and occasionally says yes to things. Rather than default no and refusal to do anything.

Are you in the UK? I didn't know PDA was diagnosed in the UK.

There are a small number of specialist schools that are really good with pda but it’s very hard to get in them

thanks for replying @Crazyducklady
Sounds like you've got it all in hand so I'm slightly in awe, assuming you're not a troll, that is :)

EHCP is a work in progress here which does not help
I'm walking on eggshells, can't do anything right, mostly heartbroken to see my lovely DS so unhappy.

Interested to hear more about the details of PDA diagnoses. Did that come after other diagnoses? What triggered it? How was it confirmed? Did you find it make things easier? Do the school understand?

@MeMeMeMeAndMoreMe that sounds more DS. he was never violent or aggressive child but has started thumping and kicking things (furniture and walls, thankfully) at home, rather than just saying no. I have to try really hard not to let it wind me up. It's such a dumb response. At school he'd never do that.

@DoYiu yes, i think it is, although its not a diagnosis as such, just a 'profile' that you can 'fit'. i think its' quite well accepted though?

@Cocopogo where are these schools?

Our nhs trust doesn't diagnose PDA. Not all trusts recognise it as a thing. PDA can be mentioned as part of a longer description of the particular kind of autistic profile.

PDA doesn't mean giving up and doesn't mean never doing anything challenging or difficult.

You can't tell a PDA child that they have to do X, that there will be a reward if they do X or a punishment if they don't do X.

With appropriate support and when the child feels completely secure and without all the anxieties being triggered, it is possible to encourage them to have a go at finding out for themselves how much they can achieve towards the general direction of X, in the context of loads of reassurance that they will not be forced to do the whole thing, they can stop any time they like and starting does not commit them to completing it, it's all totally flexible. And stick to that without pushing them to go further (they will test to see if you keep to that reassurance). Eventually you sometimes find they are achieving 90% of X of their own volition.

Ymmv of course - no two autistic kids are alike but for some the PDA seems to be rooted in crippling anxiety about failure and imperfection and a huge amount of reassurance can help.

@mamabun Definitely not a troll and definitely don’t have it all under control 🤣

My boys were diagnosed with ASD, SPD, anxiety, dyspraxia when they were very little. The PDA followed after the school commissioned an autism specialist to come in and work with them. They have always been very anxiety driven so the markers for PDA were there from the get go but became severely problematic for my eldest by the time he was about 7.

By this time he wasn’t able to cope at all in the classroom, was throwing furniture, you name it. This was then all spilling in to life at home. We were an utter disaster area and it was truly the worst time of my life.

Then entered the best SENDCO ever who listened to the autism specialist, to me, and most importantly, to my son. Slowly, slowly things improved to where we are now and thanks to his hard work, I’ve been able to dodge a lot of these errors with my youngest.

We are so lucky that the boys’ school is incredibly supportive. It’s mainstream but goes from reception all the way to Yr 11 so it’s been very easy in terms of staff knowing them. I’m also not afraid to speak my mind.

We have a very low demand home life and consequently meltdowns are rare these days. It has taken us a huge amount of work to get this far. We’ve still got a long way to go. My youngest still isn’t going into lessons with other children yet - he finds them too unpredictable. But he does go to school happily which wasn’t the case after lockdown so we celebrate the wins.

Baby steps and all that.

Will the boys ever live on their own? Sometimes I’m ‘yes of course!’ And other times I’m in despair. The bottom line is I don’t know and I’m learning to be ok with that.

They’re pretty great boys. And they both know how to make Mum a coffee now 😊

I'm not sure DS would fit a full PDA profile but his demand avoidance and extreme anxiety are infinitely better catered for in his autism specialist unit (within a mainstream school) than they ever were at a good mainstream. Getting him in was a massive, gruelling fight but luckily we were desperate enough to try. It hinged on the needs and provisions specified by the (LA) Ed Psych in his EHCNA, not on a diagnosis. I also though they don't diagnose in the UK, but I'd be happy to be corrected.

With Autism the primary need is usually listed as social communication. However make sure SEMH needs are also well specified - these can be very high in these children, and difficult to meet properly in MS. So it's important than the EHCP does not understate SEMH needs.

*(LA) Ed Psych in his report for the EHCNA, that should be

@mamabun the couple I know personally that are great with pda are at opposite ends of the country. One is in Lancashire and the other is in Hampshire.

My area doesnt diagnose PDA and actually gives an ok explanation why, but they have written demand avoident profile in the diagnosis report.

We do a low demand environment at home and he goes to a special school where they do three levels of demand and the child picks in the morning what they feel up to. Its the same learning objective but they might pick to work one to one on a subject of their own choosing and the TA just has to adapt quickly to get the learning objective in, or they go in a room which has a range of activities to pick from based on the learning, or go in a room where someone is teaching a lesson. They dont have to stay in the same thing all day. Each session has a debrief.

they also have to look at whats timetabled and pick if makes feel comfortable, stretched or paniced. As if they are panicing about something at the end of the day, they are going to struggle all day. Its a useful way to head it off and change it. Which is something i do at home now too.

Pda isn’t seperatly diagnosed in our area