What does pda profile look like when they are adults?

[primesuspected]

Dd has ADHD and autism with PDA (pathological demand avoidance)
I can’t possibly imagine what she’ll be like as an adult as she’s only 13 but I don’t know what her future looks like.
She will find a job excruciating, and the boredom intolerable.
She can be quite unpleasant when she’s criticised by authority, often retaliating with personal attacks.
I see a side to her that nobody else sees, a vulnerable girl, crippled with anxiety and unable to cope, exhausted by trying but unable to change because it’s a lifelong condition that she doesn’t choose to have but I don’t know how she will manage in the working world when workplaces are literally everything that triggers her PDA.

Hoping someone can come along and tell me of children who’ve strived at work despite their struggles with PDA.
I know working for herself would be the first suggestion but she struggles with processing information and working memory, along with attention and isn’t doing very well academically.

You don’t need to be academic to be self employed.

friends of mine who are self employed do cat sitting, dog training, plumbing, etc.

ny dd has AuDHD and has definitely improved as an adult. She’s done some paid singing and performing.

It's not about "getting better" but more learning ways to cope and manage.

PDA is underpinned by anxiety so my DD for example is always one wrong word/thought/sensory difficulty from a full flight/fight/freeze response. Any demand or perceived demand can trigger it, even internal demands like "I need to go to the bathroom", "I need to shower" can tip the nervous system into "I can't do this"
Something like me saying "oh you did so well on that piece of homework" then creates an internal demand for all future homework to be just as good, another trigger.
It's really challenging to parent. You have to abandon all the "normal" techniques like star charts (demand to do well), chivvying then along to get ready - there are so many demands in the process of getting ready for school (get up, get dressed, eat, brush your teeth, brush your hair, get your bag ready, shoes, coat etc) all in a limited time that it can be completely overwhelming and any input from someone else, however well intended can tip to dysregulation.
It's like constant constantly walking on a tightrope

Sorry OP, that doesn't answer your question. My DD is 12 but I worry about her future too, I have no idea what path she will take in life so I work every day to help her learn how to regulate herself and build life skills to give her the best start

So, there is hope.

My DH has ADHD with PDA. The key to his success has a) been finding something he's really engaged in for work and b) learning techniques to recognise and understand his PDA. This has allowed him to massively succeed in his career. We've also been together for 20years (though that is currently not going so well, it's entirely unrelated to these things!).

DD is currently being assessed but I'm convinced she's AuDHD with PDA. She's 7 and we're already teaching her ways to recognise and mange her PDA - it will a really really long road but I do think it's incredibly important. DH has to learn these things in his early 20s (from me, before we even knew why he behaved the way he did).

DS12 has ADHD with A bit of PDA. My initial reaction was to make everything as smooth as possible. Working really hard to make things be suitable and safe and easy for him. What we found is that he just want more and more and would still find a thing to rage it.
We have moved to helping him build.his flexibility. This has reduced the raging out burst considerably. I am much sticker than I would like to be but it means we are a happier family. DS is calmer and more engaged.

My ex husband is ASD with PDA profile. Career wise he has been enormously successful and found his groove very early on, and was extremely determined. He never considered doing anything else, nor whether he would succeed.

On a personal level he has the same mates from school who meet up maybe a couple of times a year.

He was a very good boyfriend. As a father and husband he was absolutely fucking dreadful. With hindsight, there were far too many demands on us and he simply couldn’t cope with the level of constant stress and flexibility that three kids in very quick succession brings. He would disagree reflexively with EVERYTHING. Even when he could see how illogical it was. Then would head to the pub and come home pissed and apologetic whilst I was on my knees.

His response to literally every request was “why can’t you do it?” Or “later.” I remember breastfeeding twins whilst our toddler roamed around causing havoc and I said “grab him will you, he’s going to get hurt” and he said “Why can’t you do it?” And I knew then we were doomed. We stuck it out a few more years mostly cos neither of us would take the kids, but when he finally went, life got a lot easier. I have never ever wanted to beat someone to a pulp as much as I wanted to flatten him sometimes. The injustice of being unable to rely on or request anything at all, still burns.

My adult son was absolutely horrific to manage as a child and teenager with this ….
now he’s different - in that he can be quite obnoxious and rude … but the main difference is that he ignores people a lot now - as a way of avoiding any conflict . But this also means he won’t replY to messages , make appointments, keep in touch with family .

hes quite socially isolated and I think that’s because he struggled so much with people when he was younger .
he does work full
tine though and that absolutely exhausts him as he has to hold himself together all day !

Ian an adult with ADHD and PDA. I masked like hell through school and spent hours alone at home to regulate.

I have found an office-based job that suits me. I got promoted quickly because I was adept at finding ways of achieving within the rules. I was brilliant in a crisis, as ADHD/PDA adults often are. I almost always manage to pull the required work out of the bag at the last minute and bend every rule going without breaking any of them.

I work in quite a structured hierarchical organisation, but have autonomy over how I deliver my work. Getting promoted quickly helped enormously as I now have even more autonomy.

At 13 I had none of the skills to thrive in a workplace. By early 20s I was able to make a success of work.

Google suggests that while ODD and PDA present in similar ways they are fundamentally different. One is driven by anxiety, the other by anger. One is can’t and one is won’t. I don’t know whether they have a similar long term resolution or not.

I figure that my ds will find his way in life, albeit likely in a lower paid job. His deep interests are so wonderful to him that he can learn in huge depth, so if he gets a job in an interest field he will almost certainly know more.ths everyone else there about it. Trouble is the deep interests change every few months. But as an adult you are so much more in control of your life. You can choose your breakfast, what to wear, whether to leave the house etc. All things that are denied to kids.

Also to those saying people grow out of it, everyone grows out of being a child. I don't know a single neurotypical adult that acts exactly like a 7 year old, so why woukd a.pda adult?

Thank you everyone for taking time to reply to this and share your experiences, for those of us in the pits of parenting young pda-ers this hope for the future is just want I needed to hear tonight !!

This is giving me hope for my dd!

I would say that this is more to do with a growing understanding of people and viewing 'behaviours' in a more person-centred, kinder way, rather than an actual clear cut difference between the two. X

I havent got direct close family/friend experience, so I can't say for sure. But for one of the now young adults that I taught, the tipping point was that the pressure was removed a bit mostly because more things became optional, but then he realised he actually did want to engage. So e.g. (simplistically) being told to put his trainers on was always a massive battle with whole strategies for managing etc. Even by the end of secondary school, I expect he'd had many more 'fine, dont then, we're going' type responses, and the seesaw tipped into recognition that no, he didnt have to, but that would then lead to other things he didnt want either.

I think that is certainly why more people are now diagnosed with PDA. It’s interesting that PDA is always diagnosed as part of autism. I wonder whether ODD is more likely to be trauma-related.

I was just going to post this. My understanding is PDA can only be diagnosed alongside autism, and it's essentially a very strong reaction to what feels to the autistic person like a change of plan/loss of control that triggers a fight or flight response. I'm a late diagnosed autistic adult, and whilst I don't think I am PDA, I certainly have recognised that many 'suggestions' to me make me feel internally angry and incredulous, and I have to pause and process before I respond. Even if it was something nice, like if my boss were to suggest I take the rest of the day off!

ODD I don't see referenced as much anymore (I work with children who often have ND and/or trauma) but when I have seen it, it has been in relations to children who aren't autistic, but have a pattern of oppositional and often destructive behaviour including that to their own detriment. It makes sense re some of the most traumatised children, who haven't learned to emotionally regulate (eg they go from 0-100) who, due to their experiences, are in a fairly permanent state of fight or flight, and who can't intrinsically trust that adults will keep them safe.

Neurodiversity Ireland - PDA supports

The above link may be helpful. Sorcha Rice is an OT who is is also AuDHD with a PDA profile.

I have find her materials and Instagram posts very helpful and have learned a lot from them.

(If you search OT Sorcha Rice on Instagram you'll find her.)

I support neurodiverse children in a mainstream school setting.

I am also Autistic [identified formally later in life at 44], highly masked for years, I suspect I may have a PDA profile, but it is complex as I masked (without even knowing I was) for so long.

However since my Autism assessment and identification, I feel so much freer and regulated. I understand my regulation needs and how to meet them. Not always easy but acceptance of neurodiversity not being wrong or something to be 'fixed' really helps.

Language around disabilities always changes, and it can be tricky to always be up to date. I try to gently advocate and inform this. The more neuroaffirmative language for PDA is Persistent Drive for Autonomy.

The following is a short excerpt from the Neurodiversity :

Persistent Drive for Autonomy (sometimes referred to as Pathological Demand Avoidance) is not a behaviour problem, a parenting issue or a lack of resilience. PDA is a nervous system survival response to pressure or ‘threats’ to autonomy, safety, predictability, dignity and connection.
For individuals with a PDA profile, demands and pressure are experienced at a nervous system level as threat. When threat is detected, the nervous system moves into survival states such as fight, flight, freeze, or shutdown.
Support must therefore focus on reducing threat, not increasing compliance, while always supporting nervous system regulation.

This thread has given me hope! The future is such a worry.

That would make it puberty 😁. You're not suggesting what is being described is just teenage behaviour I hope!?

I would think that a protective element is when a child with a pda profile is diagnosed early and parents are able to advocate for them, as well as use the right strategies to support them. I think that's likely key to a successful outcome. Another would be managing the extreme anxiety. I certainly wouldn't be averse to using medication for the anxiety, which is often off the scale (the kind that normal anxiety management strategies can't control).

My nephew's story is not so positive, but sharing it won't be helpful because there were a number of other unprotective factors in his life, which have undoubtedly had an impact on him and led him to where he is today.

Suffice to say, pda children with parents who understand, support and advocate for them can do very well when they find their niche.

My uncle (in his 70s) was diagnosed with this and also bipolar. He was diagnosed in his 60s (!) after a spate of low level shoplifting caused alarm. He’s always been someone who will compulsively do what he’s told not to do. Even daft things like not to touch something. He has bipolar too so it’s difficult to compare. But…he’s got through life relatively unscathed, had various unskilled jobs (but always worked) and a relationship and he’s a very kind person under it all.

I've been an academic and now work in RnD. A lot of my colleagues fit the description, although it's not something we discuss. We're all academic, which doesn't help if she's not doing well at school, but there are jobs out there where you're left to get on with it! Occasionally we have projects with deadlines though and that causes some serious meltdowns, although normally you have to be looking to see past the mask to notice. Only certain colleagues are allowed to work directly with clients. I think most of our support staff are also ND because honestly, it's a difficult place to work if you're NT because for once you're the odd one out!

I had been thinking of posting on this thread to say that the pda presentation of my son's autism disappeared as he moved into late teens. But actually, trying to find the words for that, I realise that it didn't really disappear. It just presented profoundly differently.

And I guess that is what we should expect: The underlying challenges aren't going to disappear, but growing maturity, changes in life circumstances, therapeutic interventions, etc are all likely to affect how they present.

In my son's case, the transition was from episodes of controlling meltdowns, towards withdrawal, a profound disconnect from others, and a lot of secrecy - which made him vulnerable. I guess you could call his refusal to engage with the mental health support he needed (he suffered from psychosis too by early adulthood) a manifestation of pda. If it wasn't for being periodically sectioned, we could never have accessed any help for him at all, and in hospital he tended to fake engagement while remaining actually deeply detached -- in a way that I think he experienced as protecting him from the 'demands' of engagement.

The changing presentation wasn't really an improvement, because if anything it increased his vulnerability. But it did allow more space for his genuinely compassionate and affectionate nature to shine through with less encumbrance. And in some ways it helped with the family dynamic, because I had respite from the constant (and distressing) attempts to control me during meltdowns, and I could see how loving and gentle he was underneath..

Hmm, I'd say my DD masks less now as she has learned coping skills, so she is able to calmly express herself and rationalise better.
At 13 we thought she'd never be able to work, late 20s she has a top tech job, earns extremely well, has a lovely boyfriend and is a home owner.
She still does not seek the company of friends but has hobby groups that she attends and is politically active.
At work she prefers to communicate over what's app and emails (less ambiguity), she often presents at conferences and enjoys this.
She still gets stressed if people place social expectations on her so she guards her time well.

I should also have said, even if she's not doing well at school, that doesn't necessarily follow throughout life. Many people come to study later, when they figure out what they want to do.

Dh (adhd) left school with no qualifications, adhd wasn't known when he was growing up. He went to college when he was older and got business studies.

He had a career in engineering, which paid ok, but was still largely desk bound. He didn't know he had adhd at the time and couldn't figure out why he spent much of his adult life miserable in his work. I had a conversation with him and suggested he might look at jobs that were more active, had more novelty and variety about them.

He's now training to be a prison officer and is beyond excited to start. Part of it is because he feels like he could bring his experience as a ND person to potentially help some of those in prison (a large number of whom are ND). He's really interested to progress the mental health and education aspects of prison life.

My son has a similar profile, he is 21 now. Unfortunately due to covid there were delays with referral and assessment, and he was a relatively late diagnosis at 17, so he didn't get support in school. College didn't work out and he doesn't work. In the home environment he's safe and ok, providing he can do his own thing without any pressure. He has online friends but barely leaves the house. I have to manage his money and his appointments. I think in the future he will have his own place but with support (probably from me). Left to his own devices i think he would spiral very quickly.