PDA fae

Tag: PDA

  • Unmasking when PDA

    I saw this post: https://www.instagram.com/p/C_lcEEEOSI3/?img_index=1 as a repost (I’ve linked the original here).

    I think it’s a pretty good list of suggestions for ways to unmask. I definitely do a lot of them, especially fidgeting and stimming in ways that feel comfortable. Connecting to the autistic community online has been like a homecoming for me, meeting fellow PDAers felt like I finally made sense as a person. I also work more to meet my sensory needs and to communicate these to others and ask for help to meet them.

    However, this isn’t the full picture for me. PDA requires some other things to be unmasked.

    A big start for me was tuning into my demand anxiety. I noticed that I met all the criteria for PDA, but couldn’t identify that feeling of anxiety at demands at first – but I knew I was very dissociative. With the help of brain spotting, I’ve become much less dissociative and I’ve become able to notice that bodily feeling of demand anxiety.

    That leads me to actively avoid rather than fawn. Fawning was a trauma response developed as the only way to maintain control and felt safety in times of abuse and trauma. It wasn’t healthy though, and lead to further traumatisation. Leaning into my desire to avoid, and to be in control of my choices has lead to a much more autonomous life. It also enables me to live openly as a PDAer

    Doing that means communicating about my experience of demand anxiety. Part of that recently has been creating my PDA flip chart (which you can see photos of here: https://www.instagram.com/p/C4ftcawsQuq/?img_index=1), which helped explain this experience to staff on my psychiatric ward. I talk to my mum about PDA as well, and she understands me a lot better now. I can advocate for myself much better now, which I am really glad for – it helps me protect myself.

    Ultimately, the biggest form of unmasking is looking for that autonomous, low demand lifestyle. It’s why I wasn’t happy to accept supported housing for a second time. It’s why having my own independent flat is lifechanging for me – I can do as I want, when I want. Equally, having carers really reduces demands on me, which makes life much healthier.

  • Carer support

    It’s been arranged that I have the support of carers in my new home. This was due to the PDA society insisting that I get a care act assessment to support me in day to day life and I’m really grateful that they stressed this point.

    The assessment was carried out by my community mental health team whilst I was still in hospital. That meant the carers were ready as soon as I moved in. They used the report put together by the occupational therapist at the hospital, but also came to talk to me at my request. That felt really important as a PDAer, to have a chance to give my own input. It helped me feel in control of the situation.

    The carers come four times a week, and help with tasks such as cleaning, hoovering, laundry, food shopping and cooking. Basically, activities of daily living. I can also go for trips such as bowling with them, which I will definitely make use of in the future. I get on well with them, which helps a lot. I also plan to do some baking with them soon, should be super fun.

    I definitely recommend this more than supported housing – there’s a lot more control and autonomy in having support in your own home. Supported housing comes with a lot of expectations of managing everything by yourself in my experience, and to someone else’s standards. In contrast, carers are actually willing to do tasks either with or for, depending on your capacity for the day.

  • Second attempt at facebook

    I’ve decided to give having a facebook page a second attempt. I find generating content for Facebook the hardest, for some reason – I’ve never quite pinned down why. I think because it wants longform posts as well, and I’m using all my mental energy creating them for here.

    I’ve thought of a few different things I can try to mix things up and differentiate the three social media platforms. I want to try and foster more community engagement on Facebook, if I can. That’s going to take being as low demand as possible, and having no expectations on the community, and enticing interest. I hope I can get some discussion going, that would be really cool.

    I’d love to be more well known in the area of PDA advocacy – it doesn’t help that I struggle to keep a regular posting schedule. I struggle to generate ideas for content, and focus on posting when I actually have something to say. Trying to brainstorm ideas would make things very demanding for me. Some months I think of a lot to say, other months are more quiet.

    It’s an adventure, let’s see where this goes.

  • Brainspotting…

    …works wonders!

    I’ve been working with an Autistic/ADHD/Dyspraxic/Dyslexic therapist recently, who has a PDA kid on trauma therapy. The modality she uses with PDAers is brainspotting, which is a variant on EMDR. Personally I think it could be called ESDR or EFDR, eye stillness/fixation de-sensitisation and reprocessing therapy. It works on bilateral stimulation, focusing on bodily sensation and rating it (which makes it a somatic therapy) – I tend to picture my bodily sensations as colours – and eye fixations. During this, you think about or visualise either a positive resource, or your trauma, either increasing or decreasing the feeling respectively.

    Tbis therapy (along with lamotrigine) has helped my life hugely. I have a lot more faith in the universe, and feel more comfortable with spirituality. I will post more about this shortly. I feel able to experience enjoyment, and trust in myself. I feel better able to self-advocate, have better self esteem, and better internal communication.

    I won’t say ‘I recommend this’, all I can say is how much this has helped me. It’s really starting to turn my life around. I finally feel like there was a point to surviving.

  • Moving demand anxiety

    Recently I’ve experienced so much demand anxiety about moving, that I’ve mostly been sleeping and hiding.

    There’s been so much to do and arrange – carpets, paint, electricals, electric, gas and water, television license, and internet. It’s been so stressful. It’s a little better now some of it’s getting sorted, I’m finally managing to feel a little excitement.

    I’m very lucky, it’s a great flat, with a lot of storage. It’s going to be so good to get away from the restrictive environment of the ward, and away from some of the repetitive conversation with ill patients. There’s a nice communal garden, and a little yard outside my flat where I can grow some plants if I wish.

    I just wish that moving didn’t come with so many intense demands. It’s really quite a lot to take on, but it’s going to be worth it to no longer be living in supported housing.

  • Accommodations I use to cope on wards

    Mental health wards are a difficult environment for Autistic people. Autism is not regarded as being part of mental health, so staff, including the psychiatrists even are not specialists in providing care for this. They have some degree of training, especially now there is the Oliver Mcgowan training required by law.

    So to cope on this ward, I’ve instated a lot of my own accommodations:

    • I have my ear defenders, and my loops to cope with noise levels
    • I have orange glasses, to cope with the bright lighting levels
    • I have a large array of stim toys to help me regulate my nervous system
    • I allow myself to hand flap and fidget
    • I have clothing that refers to neurodivergence, to help me self-advocate and show pride in my neurodivergent identity
    • I have a plastic bracelet, which is green on one side and says “talk to me” but can be flipped to a red side that says “not ok” and “leave me be”
    • I engage in conversation and activities to keep myself from experiencing painful boredom that will make me depressed
    • I try to achieve demand free time, when I can
    • I engage in playing board games with staff, to occupy my mind
    • I engage in special interests, even if that’s just reading autism blogs on instagram
    • I read magazines when my concentration is poor when I am recovering from mania, again to help reduce boredom
    • I take melatonin to help correct my sleep pattern
    • I created a laminated flip chart with the support of staff (i.e. I am not allowed to use their laminator myself!) to help quickly explain PDA to staff members

    These accommodations make my stay just a little more bearable for me. They aren’t a complete fix, but coping here would be so much more difficult without the awareness that I am Autistic, and that these things can benefit me.

  • PDA lies in the accommodations needed

    Sometimes, even now with an official diagnosis, keeping this blog and my instagram, having connected with the PDA community…

    … I still sometimes doubt that I’m PDA.

    Sometimes I have quite a lot of demand capacity, and these times can last for long durations – days/weeks.

    In these times, I feel little demand anxiety. I am able to meet requests. I am unbothered, or much less noticeably bothered by the expectations of others foisted onto me.

    I can offer to do things, that I could easily avoid.

    I can meet my own expectations for myself, and my bodily needs.

    In these times, it feels unlikely that I truly have PDA.

    However, in these times, my demand cup is being emptied by something.

    It might be someone else’s support. Or getting good sleep. Or having had a restful enough period, or enough demand free time, or a reduction in anxiety. Or I am spending enough time engaging in special interests (this is my recent situation – I have been reading a lot about queerness, perception, baye’s theorem, spending a lot of time on instagram reading about autism and ADHD).

    The fact that I need these things to cope with expectations and demands is part of PDA itself.

  • Externalising PDA

    I had thought for a long time after learning of my PDA neurotype that I was definitely an internalising PDAer, or at most a mixed PDAer who mostly internalised.

    I was wrong. That’s my response to trauma. I learnt to fawn, i.e. comply, to retain control of situation through maintaining safety. That was the only acceptable response as a child and teenager, no matter how much that went against my true nature. It caused an awful lot of dissociation, especially as I got older, and disconnection from my body and emotions. I dissociate less now that I have acknowledged my experience of demand anxiety, but I still struggle to name sensations in my body, which makes the process of therapy rather difficult, as brain spotting relies on doing this to work. I am slowly learning to be able to pay attention to my bodily experience, but probably still spend the majority of the time disconnected. I live in my head, rationalising everything to cope.

    I’ve realised during this hospital stay that my unmasked, authentic self is very externalising. It makes me wish I had been in the early cohort of identified PDAers, that perhaps that would have lead to some understanding – but perhaps that early the successful approaches for PDA children had not been developed?

    I can see now how my externalising lead to the responses that I got from adults. There’s no excuse for how I was treated, all children deserve safety, but I can see how things unfolded. My mum says I was always quick to escalate to meltdown, and adults were determined to take any action possible to prevent that, with very unfortunate consequences. At a young age, I was likely very vocal about my autonomous wishes, and had adults who strongly believed that adults were to be obeyed, not challenged, which was not the ideal environment for me.

    I want to find a way to be my externalising self, authentically, without escalation to meltdowns. I definitely need a low demand lifestyle, so I am very glad not to be heading to supported accommodation, because I have come to the opinion that “low demand” is not possible in that setting (especially not mental health related supported housing, which does not understand anything about autism, let alone PDA). I have a lot more faith that in my own place I can create my own rhythms for “activities of daily living”. I would be willing to have the support of a personal assistant, to ensure that flat maintenance does not suffer – hopefully this will be possible.

  • PDA and dental care

    As a kid and teenager, I was prompted to brush my teeth regularly by my parents, who’d get very involved in the process. Unfortunately, when I reached 17/18 they abruptly stopped this, saying I was old enough now to manage this for myself.

    My PDA t0ok this as an opportunity to be avoidant. I would have benefitted from a much more gradated approach to being in charge of my own teethcare. It didn’t help that my parents had set the expectation that adults use adult toothpaste, which is a sensory hell for me, far too strong a flavour. Instead of being able to continue on with the habit, it turns out it was in no way a habit for me to brush my teeth, and I neglected to do so for about ten years. This was not helped by my worsening mental health, and ADHD, which both likely also contributed to this self-neglect for so long.

    Now, unfortunately, thanks to this, my gums are in a very bad way. I need to see a dentist soon because it’s gotten so bad. I’ve had quite a few bad experiences with outpatient procedures, including dental, because I don’t seem to respond well to local anaesthetic, in that it doesn’t cause me to go particularly numb – I can usually feel the entirety of the procedure, including all the pain.

    As a result, booking to see a dentist was very terrifying for me. I had a panic attack, cried and ended up very depersonalised (a form of dissociation in which your own person/body does not feel real to you). Thankfully I did manage to not be avoidant – more in terms of trauma avoidance here – and did book the dentist appointment. That was mainly because staff here at my hospital will be able to attend with me, otherwise I probably would have avoided seeing a dentist.

  • Fawning as necessary, and moral

    It’s very hard not to feel that avoidance makes me a bad person, naughty, non-compliant, defiant, bad.

    People in authority, with jobs to do, people who might get in trouble for allowing the avoidance put so much emotional pressure on. Everyone has something they’re willing to be coercive over, in my experience.

    It feels, very strongly, that the only means of being safe in this world is to fawn. To comply, and dissociate from the demand anxiety this causes, even if this is at psychological cost to myself. It feels, therefore, that a PDA existence can not be a trauma free existence – because the process of doing this is traumatic in itself.

    It’s awful. I hate this.