PDA fae

Category: Update

  • 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.

  • Disability sport

    Gosh I am really loving the Paralympics this year!

    I was really upset in 2008 when Beijing was allowed to host the Olympics. It had been on the proviso that they improve their humans rights record, they did not. Despite that initial pre-requisite, they held the Olympics there anyway, and as a result, I didn’t watch for a few years – not even London 2012. Then, I missed most of Tokyo 2020 due to being pretty unwell in hospital at the time it was held (in 2021, due to covid).

    I’m still pretty upset about the 2008 Olympics, but I think catching some of the sport at the last ward whilst well enough to enjoy it just piqued my interest. The Olympics were perfectly time for the first week and a half of living completely on my own for the first time in a year. I spent most of it lazing around, either in my bed with the tv playing, or on the sofa. I slept through a lot of the events, or just listened.

    I did catch the 800m British women’s win, and the surprise rock climbing gold – I forget the respective athlete’s names at this time. Those were the highlights, alongside Botswana winning their first ever gold, that was very special.

    I’ve managed to actively watch an awful lot more of the Paralympics. Channel 4 has managed brilliant coverage of the sports. I’ve noticed they’ve employed loads of disabled presenters, and made real effort to make things accessible for disabled viewers. I also really enjoy the Last Leg shows at the end of the night – great comedy, great disability representation!

    My only gripe is that there’s no place for dyspraxic people at the Paralympics. This feels unfair to me, as dyspraxia definitely affects physical performance. It makes me feel that we should create a “Dyspraxia Games”, similar to the Deaflympics.

  • 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.

  • New theme and other thoughts

    Got bored, changed things up!

    I’m tempted to try working on some “easy read” posts, as some of our community have co-occuring learning disabilities (and I’d like to practice writing in this style).

    I’m also all moved now! Check my facebook and instagram for more details!

  • 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.

  • Is this “normal mood”?

    I’ve been taking lamotrigine for a couple of weeks now to lift my mood. We’ve increased it rapidly, due to my being on a ward, so we’re able to monitor for the very serious rash it can cause. It seems that at 50mg it’s enough to cause a definite mood shift.

    I actually enjoyed activities recently! Just sitting and knitting brought me pleasure. I felt good when I swam. Just the little things of life made me feel enjoyment – this is very new to me.

    Today is a bit of a slow day, and I’ve questioned, oh no I am feeling low again? I was expecting OT groups, but instead people had one to ones. I didn’t sleep well the night before, so I’ve napped all this afternoon, and when awake I’ve felt bored.

    But I don’t feel in pain emotionally. Today feels boring, not life.

    I think that’s a major difference.

  • 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.

  • Everything sucks a little right now.

    I’ve been experiencing a lot of very low mood recently. A lot of anhedonia – loss of pleasure in activities, and a lot of feeling like a failure of a person. A failure for not graduating from university, for never having lasted in a job, for not being able to drive, for not being in a long term relationship with a family and my own home. For not being a settled 30 something.

    We’re trialling me on lamotrigine. It’s been known to cause me severe constipation the previous two times I’ve tried it, and it can cause a lethal skin rash, so this may not go well. I have to really hope it does though, because it’s basically the only safe mood lifting drug I can try, i.e. it won’t cause me to experience mania. Don’t worry, it’s possible to intervene if a rash does start to develop.

    It makes me really nervous. We all respond differently to medications and lamotrigine may just not work for me at all. If it doesn’t, I’m really out of options and just have to tolerate the life destroying effects of the near constant low mood I experience (I believe one psychiatrist felt I had dysthymia alongside bipolar). I don’t know how I’d cope with that, and it’s going to be a long slow journey to find out, because due to the rash, lamotrigine has to be increased very slowly.