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.

I'm no help I'm afraid, but would follow with much interest.

Hi, I never comment on Mumsnet threads but feel I must respond to your post. My daughter has ADHD and OCD and ODD. As a child, she could not have been more challenging or troubled. I’ll spare you the gruesome details. Now, aged 24 she’s lovely. She still has struggles obviously but she has a job that she has held down for a year now and lots of friends. She is kind and funny and smart with enormous resilience. Things can get better- sometimes it just takes time- a long time.

Your DD sounds like my son, also 13. He's very bright but unable to knuckle down and do any actual work and I worry about his future.

He is autistic, and while he hasn't been assessed for PDA profile we treat him as though he has PDA, which helps at home, but not smart school.

I don't know what the future will look like for him and I'm really scared for him.

@AniseDanehill @primesuspected is PDA another wording for ODD? 10 years ago ODD was spoken of but now I only see PDA and am wondering what's the difference if any. Ds was diagnosed with Autism with ODD elements but not an official ODD diagnosis as such. He is still in school but just turned 18, so not a functioning adult yet. At home, he is still argumentative and often difficult, if he is upset he gets angry he lashes out. He can start an argument over the stupidest thing. But that's not very often anymore. To the outside world he is polite and sociable and hard working. He is an A student and successful athlete. He goes out with friends at night and drinks occasionally, he manages his social life and school life without much input. He drives my car and i trust him, i genuinely believe he is a very responsible person. I feel he will go far in life. If you had interviewed my a few years ago my outlook would have been very negative, I sometimes can't believe how well he has turned out. I think it helps that we gave him a lot of freedom as a teen, he respected our boundaries because he knew we were more liberal than most. I admit part of that was a fatigue from constant conflict, sometimes it was easier say yes than deal with the drama. I hear friends with teens arguing over the stupidest things, I learned to pick my battles long ago and don't sweat the small stuff.

I think my DD is Autistic with a PDA profile (see username 😂) and I wonder this. She isn’t even going to school at the moment.

I have a a younger AuDHD colleague who thinks she has PDA. She is well respected at work and has lots of friends, some people find her tricky but I have a great relationship with her unsurprisingly.

Her advice to me is basically let DD get on with it as she won’t be told. For example, if she doesn’t wash her hair and gets bullied, she will make a decision herself whether being bullied or having the demand of hair washing is preferable and slowly learn how to feel like she has autonomy or at least know what she is willing and able to bend/work on.

@Dontlletmedownbruce. Think so . My dd was diagnosed as odd, pda didn’t exist. Teen years were challenging but around 20 things improved dramatically and quickly. Her therapist described the teen years as hormones on steroids. She’s late 20’s, eek, independent, married, not working still studying but to be completely honest, it’s not my problem now.

To those going through the teen years the advice I was given was to be fair and flexible where it helps them but have red lines you do not waiver on because once you do you loose any authority you had. With me it was you go to school, doesn’t matter how much you hate it, how little sleep you claim to have had or how you (whatever made up excuse) you go, she was frog marched to the car after deliberating missing the bus so many times, but she went and was handed over to reception (often late) and taken to her study space (she had a private space as couldn’t deal with the classroom). Looking back I don’t know how I did it, exh has since apologised for not doing enough (we were married at the time) . She aced GCSE’s as they are not difficult it born with an amazing memory and super bright, she didn’t study for them apart from me buying the study guides, she rarely made it through the school day without me fetching her, I lost jobs due to this. Delightful adult now! Crazy isn’t it

I’m not sure if ODD is the same as PDA - it sounds very similar. I truly thought my daughter would end up a drug addict on the streets at one point, or in prison. If you’d told me when she was a teen what she would be like now, I would have thought you were in the realms of fantasy.

Your posts give me hope

I taught two children, a few years apart, with ODD.

Both are entirely functioning 'normal' adults now.

They just learned to get on with it - I don't mean that in a mean way or that they were being pandered to, their challenges were very real as children. But when the environment around them changed to stop 'allowing' their behaviour, they stepped up. I imagine some children might not, but the two individuals I taught did.

My friend's 13 year old seems like he'll end up in prison - this is really great to hear. Hopefully lots of time for him to get better.

This is giving me hope too. I'm at times terrified that my 13 year old is going to end up a drug addict, or living at home, playing computer games 24/7, for the rest of his life

I asked this I a thread recently OP. I didn't really get a sensible response so interested to read the replies here. I've never known any adults with PDA but I had also never heard of it until I read it on MN.

@tinybeautiful i do think there is an element of this and my colleague agrees. We were always very authoritative, firm, fair parents but when DD fell apart we increment by increment started treating her like a china doll and the more power and control she gets the more she wants and the less she respects us. Whilst acknowledging she is struggling and incredibly anxious, we have had to take a step back and treat her like the adult she so desperately wants to be and she is slowly stepping up.

I'd love to gain insight into it, why do people with PDA behave as they do? Do they even know?

I’m glad the posts are helping. It’s a lonely and frightening place to be sometimes as a parent with a child who has so many challenges and sometimes feels like an enemy. I used to go swimming and do meditation to try to protect my mental health- not always successfully but it did help.

So I just looked it up and PDA and ODD are not quite the same but may look the same. It seems PDA is more anxiety led whereas ODD comes from a need to control others:

Pathological Demand Avoidance (PDA) is a complex neurodevelopmental condition that falls within the autism spectrum. Individuals with PDA experience an overwhelming anxiety triggered by everyday demands and expectations, leading to avoidance behaviors that can appear as defiance or opposition. On the other hand, Oppositional Defiant Disorder (ODD) is characterized by a persistent pattern of angry, irritable mood, argumentative behavior, and vindictiveness towards authority figures.

Adult with autism and PDA profile. It definitely became less of an issue as I got older and learnt ways to manage. At school I was constantly in trouble and teachers said education was wasted on me and I’d likely end up in prison/homeless. I’ve lived independently since I was 18 and went to university up to Masters level. Work in a respected field and whilst I have had some work conflicts I would say overall I do well in my career. Still find demands of deadlines challenging and high anxiety levels, but everything gets done. Raising children successfully, but find romantic relationships too challenging.

After several years having treatment for MH struggles my PDA profile daughter is no longer under any services, medication free ( bar ADHD
meds), doing amazing at college and planning to go to uni as a mature student. She is an absolute delight. Trust me we’ve had the hardest few years and I never thought we’d see this day.

She was lucky enough to get the treatment she needed and is now in control of her life. 2 important factors.

@DontlletmedownbruceThat’s interesting. Vindictiveness- yes! My daughter once told her school that I’d pushed her to the ground, kicked her and pulled her hair- none of which was true. The school reported to social services but there was no escalation because no history of any other incidents, although I was warned that any further reports from my daughter would be actioned. When challenged, she said she’d told the school lies because she was angry that I wouldn’t let her go out at night on her own. She was 11.

Adult with pda profile, very much like your dd at that age. I am now 45. I had many jobs as a young adult and did very well at work but was only able to stay in jobs for around 6 months to a year before the boredom and stress of relationships at work set in. I did hold down a good, highly paid, role as a senior marketing manager for a luxury cosmetic brand for quite a while.

I’ve had 3 long term relationships and been married twice, engaged three times. Been with dh for 16 years now. He’s very similar to me so we muddle along well. 2 dc now teen and adult age. I think we all have forms of autism - youngest dc aged 13 has it the most severely and attends complex needs school. I find friendships impossible, too much pressure and feel I get things wrong, so just don’t bother with them. I’m happy with just my dh and dc who all understand my need for my own space.

The wheels really came off when I went into early menopause aged 37 due to autoimmune issues. I think menopause for a lot of women is difficult in that once the oestrogen stops the rose tinted glasses come off and that’s even more true for me. I just feel I can’t cope with work, people, everything anymore. It’s like I’ve been masking my whole life and I just had to stop. Thankfully dh earns well and I haven’t worked since I was 37ish. I know I’m lucky to be able to make that choice. We manage on dhs wage, my PIP (for my complex physical health) and dcs dla. Thankfully our home is paid for via my previous high earnings and some inheritance.

I don’t think anyone can really predict things for your dd but it’s certainly possible to have a successful life and work balance with autism and pda depending on how much she can mask / bend to the conventions / and how severe her underlying autism is really.

So it begs the question then: do they 'grow out' of PDA?

No, you just learn to mask and manage it better.

My youngest son has a diagnosis of autism with a PDA profile. He was diagnosed at 7, attended mainstream primary until year 5, when he went to a SEMH school as they could no longer cope with his violent outbursts. At that point I was regularly told he’d end up in prison by professionals. I was permanently covered in bruises. He would not follow the curriculum under any circumstances and refused to read or write on their schedules. He just woke up one day and he could fluently read etc.

I am naturally a calm flexible parent, and I/we have moulded to him, rather than him change or grow out of it. I still had very firm boundaries though and if he was disrespectful he was expected to apologise. If he broke something he’d have to save up for a replacement. Everything is pre warned and organised for him by me to enable him to function. He’s a good few years behind his peers. He sat a few GCSEs and is now about to finish college. Not sure what he will do next, apprenticeship in his chosen field maybe.

From having an autistic child I have realised that I too am autistic and probably PDA, I’ve just spent my whole life masking it. I’m 47 with a successful career in a demanding stressful scheduling/traffic control type role. I find friendships baffling and am a bit of a loner.

These replies give me hope.
DD is 11 recently diagnosed with ADHD but I suspect PDA as well. It's currently like riding a rollercoaster, everything is fine and calm and then we're hurtling into a chaotic meltdown for in my eyes no apparent reason but some innocent act has tipped her over the edge.
Currently dislikes school so mornings and end of school can be particularly tricky I think she currently managed to mask and control it at school but it's obviously a release at the end of the day.

Very interesting thread.

I’d love to know if these kids generally become less hostile to rules, expectations and figures of authority, or just learn to cope/mask better? Also, is it quite likely that they are working in more solitary jobs, rather than sensory overload of a large school and classroom?