Wednesday, 21 March 2018

Our PDA Story {week 31}

Time for week 31 in the series 'Our PDA Story' where experiences from other people living with Pathological Demand Avoidance, or who care for others with PDA, are shared.

I'm delighted to be able to bring you the perspective of another adult living with PDA this week. This writer has a very successful Facebook page called Sally Cat's PDA Page where she shares helpful memes describing PDA in more detail. 

Her post looks at a specific process and the difficulties with that for those with PDA - air travel. It can be particularly tricky for many with autism and although we have travelled on planes fairly regularly with Sasha since she was little, it has got more difficult as she has got older. We are now at a stage where she is refusing to fly because her dislike and fear of it is at an all-time high. If you read on, this post explains in a lot more detail what makes it so difficult.



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PDA Airport Stresses and Some Helpful (and Less Helpful) Accommodations


As an adult PDAer with sensory issues, I find air travel extremely stressful. I am stressed by the demand to arrive at a certain time; to jump through various security hoops in the correct order and meekly accommodating their arbitrary demands (cope with the bright lighting and echoing sound; join the queue; obediently shuffle along with it following the cordoned path; take off your shoes; have no liquids bigger than 100ml; these must be placed in clear plastic resealable bags; have your boarding card ready; accept that you cannot now go outside; have your passport ready; wait for an uncertain amount of time in a crowded departure lounge, etc, etc). And then, because we do not have a high income, we can’t afford to pay extra for seats near the front of the plane and I suffer intense claustrophobic stress struggling to get to our middle-of-the-plane cramped seating and then, worse still, waiting to get off again. Confinement for me is an intolerable demand. I have to be free. Leaving planes I barge past people hurtling along as fast as I can to break away from the crowds around me. 

I’ve realised that this behaviour is actually meltdown. I react the same in crowded shopping centres. We carry only cabin baggage not just to save money, but to avoid the additional confinement of having to wait interminably for hold baggage to appear on the carousel. Any increase in airport confinement time increases the stress. Factor in our now six-year-old PDA diagnosed daughter who also has sensory issues and you can see why I have sought to find ways to reduce these pressures when we fly. 

We flew with KLM from Bristol to Toulouse via Amsterdam to visit my partner’s parents in February last year. I emailed KLM and Bristol Airport (I avoid phone calls) and arranged for us to have Special Assistance which would fast track us through security and allocated seats by the back doors of the plane for each of the four journeys. This sounded like a helpful accommodation until we experienced it. We were required to wait at the Special Assistance point until we were walked through security. This caused us to be more rather than less confined. 

Worse, we were required to be first on the plane and last off. Sitting by the back doors did feel less claustrophobic for the first flight, but was extremely unhelpful for the second one (Amsterdam to Toulouse) because they only opened the front doors so we were trapped at the back of the crowd with my anxiety going through the roof (Unfortunately not literally, or we’d have been able to exit more quickly via the hole it had made!) Once we finally escaped the plane I was confronted by a keen looking man standing next to an empty wheelchair scanning the departing passengers for that Special Assistance traveller. There was no way I was going to subject myself to sitting in a wheelchair and foregoing even more personal control (and dignity) so I pretended not to notice him and marched swiftly past. I made the decision not to use their Special assistance for our homeward journey and found it less stressful as a result. 

Our next flight was to Naples from Stansted with easyJet in April this year (2017). I found out that Stansted have an autism wristband service similar to Manchester’s award winning one and emailed them and easyJet to enquire. This system actually proved very helpful to us. There was confusion about where to pick the wristbands up from (counterintuitively, the Special Assistance desk did not keep them) but beyond this the system was fantastic. The wristbands permit the wearer and their group to use the fast track queue unaccompanied. EasyJet had also allocated us free of charge seats second row from the front. This was marvellous. So much less claustrophobic and we had a fairly stress-free travel experience. We even found belatedly that we’d been allocated free Speedy Boarding for our homebound trip, but hadn’t known to use it. Overall, very impressed with Stansted and easyJet’s positive accommodations for PDA autism. 

Our last trip unfortunately ended less happily. We flew from Bristol to Belfast with easyJet in August. Emailing easyJet proved stressful because they took a long time replying and then, once they did reply, informed me they’d booked us Special Assistance with no mention of autism wristbands, Speedy Boarding or free allocated seats up front. I emailed back citing our earlier Bristol and Stansted experiences and was relieved and grateful when easyJet responded that they had signed us up for Bristols autism neckband fast tracking service, Speedy Boarding and free allocated seats three rows from the front (if you don’t ask you don’t get!). This was all well and good and we had a pleasant outbound journey. 

It all fell apart on our return. My demand avoidance had put me off enquiring about fast tracking through Belfast Airport and I’d assumed normal queuing wouldn’t be too bad as it is a small airport. We’d had no major stresses travelling back via Toulouse and Naples. However, alas, how wrong had I been! The cordoned snaking queue to security lasted a whole hour. I felt hot and stressed and claustrophobic and anxious and trapped and overloaded to the extreme. To make matters worse, I was singled out for a spot search in which the security guards herded me into one of those giant scanners where they can view you as if naked. I was prodded and ordered to hold my arms up and angle my feet just so. This is a pathological demand avoidance hell scenario, especially as PDA comes with high social anxiety and being scrutinised naked was not good for my chi! I was desperate to eat something. I’d been so anxious before setting out for the airport that I’d thrown up my breakfast and I suffer dizziness if I don’t eat. Breaking past security we came to a large canteen cafe area (replete with echoing sound and glaring lights). I was in minor meltdown by now and barged my way to a small vacant table where I dumped off my cabin bag. My man then made an innocent but unfortunate error of judgement. He told me that he’d leave me sitting there while he went and got teas and food for him and our daughter. 

Now, I never WANT to meltdown and I try to stay calm and rational because this is how I want to be, but meltdown is not a choice. I recently heard described as akin to having an epileptic fit and I agree with this analogy. I cannot control what happens when I meltdown. All I can do is try to avoid the triggers. Unfortunately at that moment, I had already been subjected to prolonged and severe triggers (confinement, sensory overload, etc) and now I was confronted with three more triggers: 1) not being given choice (my partner had told me he was getting food first), 2) being confined to wait with our bags and, 3) uncertainty over how long I would have to wait for them to return. Intolerance of uncertainty has recently been shown to be higher even than anxiety for PDA children and I certainly relate to this. Nearly every meltdown I have is triggered by being kept waiting for an uncertain amount of time; the longer I wait the more my stress builds. I try to rationalise the situation and stay calm, but the stress still mounts. 

I am very sorry to say that I was a complete bitch to my young daughter and partner by the time they appeared with their food and a tea for me. I don’t have physically aggressive meltdowns, but nothing nice comes out of my mouth. It honestly feels like I’ve been possessed by a demon. I watch myself in horror as I say one nasty, cutting, hurtful thing after another. I hate myself, but I cannot control it. It is a vile thing for all of us involved. My daughter started crying, though she tried to mask it. I was able to break through my meltdown to tell her I love her. I was embarrassed and short of words for a long time afterwards, but kept telling my daughter how much I loved her. On the plane (and our Speedy Boarding had failed us somewhat in that we got stuck in a crowd unable to get upfront to use it for sometime) our daughter told me that she liked being on aeroplanes but doesn’t like airports because they are too noisy with too many people. I can only say I agree with her on that. 

Next time we fly, I will make sure we have fast tracking outbound and return. I am very grateful to easyJet and the airports we’ve used for often generous the autism accommodations they have implemented and I am happy to see that these accommodations are fine tuning and increasing. I’m thinking of traveling somewhere by ferry instead of plane when we go abroad next year, but next time we do fly, I am hoping we’ll have a much less stressful experience. 

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA.

PDA can often be mistaken for ODD (Oppositional Defiance Disorder) but there's a definite difference; more information here: the difference between PDA and ODD.


A variety of experiences of living with PDA can be read using the link This is our PDA story

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website. 

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 which I will be helping with - hope to see some of you there! 


Pathological Demand Avoidance Society website


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