Pathological Demand Avoidance (PDA)

Trigger warnings – diagnosis, medical model jargon used, descriptions of demands. Plus, I tend to write like a lecturer with a big stick up my bum, sorry!

We are starting our work experience programme for young people, who are out of education, soon. We might be working with two young people, who have a diagnosis of autism with PDA traits, so I have been busy finding out more about this. I thought I would share what I have learnt so far, while fully acknowledging that I have no expertise or lived experience of PDA.

PDA is a rare (or maybe just under diagnosed?) part of the autistic spectrum. It is characterised by avoiding demands. Demands are expectations, commands, pressures, obligations; essentially, anything that is not generated by the PDAer is perceived as a demand. To a degree, we all do this; I have been putting off writing this blog post for over a week! People, who are on other parts of the autistic spectrum, may be more likely to show demand avoidance when they are stressed too. PDAers, however, experience demand avoidance more frequently and with far greater intensity that neurotypical people do in their everyday life; hence it is Pathological Demand Avoidance. The demand avoidance is also strongly linked with intense anxiety. It didn’t seem clear to me how this mechanism exactly worked, and, I think, this is due to a lack of understanding about PDA rather than me not understanding the literature. It could be that demands trigger intense anxiety and this leads the person to use avoidance techniques. However, some PDAers feel that demands automatically lead to avoidance, and that causes them anxiety because it often leads to conflict with other people or other negative outcomes. The avoidance techniques used can be extreme too: falling to the floor, spitting, violence towards others, self harm, shutting down. Although, there are plenty of PDAers who mask their anxiety so no one else is aware how hard they are working or how challenged they are by the social world.

Demands are a massive part of life, but neurotypical people hardly notice that they are everywhere! Demands can be intrinsic (coming from within us; e.g. a rumbly tummy demands that we eat something soon) or extrinsic (in the environment; e.g. a traffic light turning red demands that we apply the brakes). Demands can be explicit (e.g. a teacher telling us to turn to page 36 in our Maths book) or implicit (e.g. someone telling us that they have turned on the hot water system so there is enough hot water for a shower; the implied demand is “have a shower!”).

I am writing this in the morning. I have just completed getting my children ready for school and doing the school run. The sheer number of demands on me and the Allergy Brothers in that process becomes overwhelming when you start to think about it: getting up when the alarm goes off, making packed lunches, making breakfast, eating breakfast, having a shower, getting dressed in school uniform, brushing teeth, combing hair, putting on school shoes, choosing clothes to match the weather, getting out the door at a set time (might have failed at that one actually…), etc, etc. If each of those demands triggers intense anxiety, then getting ready for school becomes a emotional ultra marathon. At least, I have returned home. Today, my time is my own until I collect the boys from school. I am working on Allergy Brothers business, but I am choosing to do this. The Allergy Brothers are at school, where there is another barrage of demands: responding to registers, sitting in a specific seat, being quiet, listening, lining up, sitting in assembly, and more, and more through out the day. It’s no wonder that so many children with PDA fail to thrive, or even survive, in a traditional school environment.

Unfortunately, it is hard for young people with PDA to access the support they need to be successful. The first stumbling block is that PDA is not widely known about, and that was my motivation for writing this blog post. The second problem is that PDA is not recognised in either of diagnostic manuals (ICD and DSM) that professionals use. This has led to a postcode lottery, where some areas diagnose PDA and other areas don’t. We live in Essex in the UK. PDA is not a diagnosis recognised in Essex, although people can travel to clinics in London, Norfolk or further afield for diagnosis. However, it may then prove difficult to get organisations in Essex to accept these “out-of-county” diagnoses.

Misdiagnosis is also a big issue. PDA is part of the autistic spectrum so there are traits shared with other forms of autism, such as a lack of understanding of neurotypical social behaviour, obsessions, etc. This can lead to a person being given the diagnosis of autism rather than PDA, and this can be disastrous. The strategies that support an autistic person (visual timetables, first-then boards, plenty of warning about changes, sticking to a routine) are often demands! Therefore, these strategies would make things worse for a PDAer. The Allergy Brothers and I have been writing letters to Beth, a young person with PDA. Her story, told here by her Dad, shows how badly things can go wrong when a diagnosis is wrong.

The further stumbling block is that it is possible for PDAers to thrive, but that requires flexibility, adaptability and empathy from others. These are all things that institutions, like a school, struggle with.

I don’t want this to be a negative post, but it would be unfair to not recognise the struggle families have to access appropriate education in Austerity Britain, and also the gargantuan effort that PDAers put into surviving in a neurotypical world. I am going to finish with the positives of PDAers. Many PDAers are loving, creative, imaginative, caring, courageous and resilient. As adults, they can craft lives that they can control, and achieve in the worlds of work, relationships, and parenting.

If you would like to know more about PDA, I recommend going to the horse’s mouth, and reading the book “PDA by PDAers“, compiled by Sally Cat (N.B. – this is an affiliate link.) Also, the PDA Society website offers a wide variety of information for adults with PDA, families and professionals.

Finally, please let me know if there are any corrections that need to be made. I would especially like to hear from those with lived experience of PDA. Have I got this right? Can you tell me more about what you would want from a work experience programme? Thank you.

Thanks to Helen M., who offered suggestions on this post. She pointed out that PDAers are just as likely to shut down as they are to be aggressive in response to demands. She also recommended the following resources : PDA Parenting blog, Riko’s Page blog, Steph’s Two Girls blog, Harry Thompson’s YouTube channel, and The National Autistic Society website. Thank you, Helen!

Advertisements

Top tips for Outpatient Visits to Great Ormond Street Hospital, London.

The Allergy Brothers recently had their annual appointment at GOSH.  We are very grateful for their treatment at GOSH, but we were also extremely glad when their appointments dropped from every couple of months to once a year.  It’s a stressful and long day.  We have discovered a few things that make the day go a bit smoother so we thought we would share what we have discovered.

  • Leave lots of time for your appointment.  The consultants are also on call for all the children who are inpatients.  They are constantly being phoned etc about those patients while running their clinics.  This means the appointments are almost always running late, very late.  Bring snacks and drinks (water is usually provided in the waiting areas).  Bring toys, books, devices etc to pass the time.  Don’t book a time-limited travel ticket, unless you like to live life on the edge.
  • The People’s Supermarket in Lamb’s Conduit Street sells a range of dairy free and gluten free foods.  It’s a wholefoods mini supermarket.
  • Allergy Dad appreciated his double espresso from Redemption Roasters in Lamb’s Conduit Street.
  • There are lots of chain restaurants in The Brunswick Centre, Bernard Street, if you need somewhere familiar to eat or to check allergens beforehand.
  • Our number one top tip is to visit Coram’s Fields in Guildford Street.  This is a children only park (no adults admitted without a child!), that is very close to the hospital.  It’s great for airing The Allergy Brothers out before and after our journeys from North Essex to GOSH.
  • Allergy Wizard recommends taking a taxi to get there!  He’s a bit cross that Allergy Dad’s car could go in the congestion zone for this visit so he didn’t get to go in a black cab.  When we have used a black cab in the past, the drivers have always refused tips, and some of them have undercharged us to travel to and from Great Ormond Street!  Thanks, Hackney Carriage drivers of London!

Chuffed about Chufa milk? (DF,GF)

We have a problem here at Allergy Towers.  Both the Allergy Brothers do cooking at school.  In fact, Allergy Wizard’s class cook every week and have now progressed to the stage that they make a two course cooked lunch for themselves once a week.  I think this is fantastic.  It can be difficult juggling ingredients though.  The biggest problem we have is dairy-based recipes.  The Allergy Brothers are allergic to dairy, soya, coconut and rice.  At home, this isn’t a problem as we use almond milk.  Unfortunately, there are children in their class with severe nut allergies so they can’t use any nut-based milks at school.  This has rather left us scratching our heads.  Chufa milk (AKA tiger nut milk) seemed to be the answer.  Despite its tiger nut nickname, Chufa is a tuber, not a nut, and so shouldn’t trigger a nut allergy.  However, it can trigger an allergic reaction in people, who have pollen or grass allergies.

We decided to try this new ingredient at home, and the boys were keen to make a mango smoothie.

Ingredients

As much mango as you can be bothered to cut up from a fresh mango

Chufa milk (enough to overfill the blender so it runs all over the counter)

Maple syrup (as much as you can bung in before killjoy Mum notices)

Method

  1. Cut up the mango while your Mum tries not to fret and fuss about the big knife.20180416_172829
  2. Bung the mango in the blender with too much Chufa milk and sneak in some maple syrup.20180416_173012
  3. That’s it.

Allergy Wizard tried their smoothie first, and within a minute or so began to have an allergic reaction.  HIs mouth felt “spiky” and he began coughing and finding it hard to breathe.  Thank goodness, this stopped very quickly after he had some anti-histamine.  But clearly, not a non-dairy solution for Allergy Wizard.

Amazingly, Allergy Plant was happy to try the smoothie after his brother’s reaction, he really enjoyed it.  He also finished off the rest of the Chufa milk carton the next day.  Chufa milk tastes nutty; the closest thing I could compare it to is macadamia nut milk.  If it wasn’t for Allergy Wizard’s allergic reaction, we would have been very chuffed about Chufa milk.

We bought our milk from Planet Organic.  Here is an affiliate link to the Ecomil Chufa milk; they also sell the raw Chufa for snacking, putting in salads, baking etc.

Cornetto (GF, vegan)

Sorry for the lack of blog posting.  We have been very busy behind the scenes with some exciting new projects, and also enjoying having some holiday time with the Allergy Brothers.  There has even been some almost summery weather for a day or two, which fully justified testing these new Cornettos/Cornetti.  When I saw them in the supermarket, I let out a very audible squee of delight.

INGREDIENTS

Water, sugar, vegetable oils (coconut, sunflower), glucose syrup, glucose-fructose syrup, maize starch, corn flour, HAZLENUTS (1.5%), fat reduced cocoa powder, SOY extract (1%), emulsifiers (mono- and di-glycerides of fatty acids, sunflower lecithin, ammonium phosphatides), stabilisers (guar gum, locust bean gum, carrageenan), flavourings, salt.  May contain: milk.

So was my delight premature?  This might be a me thing, but I think the best bit of a Cornetto is the chocolate at the bottom of the cone: practical (it stops any melted ice cream running out) and delicious.  I am pleased to say that the gluten free cone is very crisp and tastes like a nicer waffle cone. The dairy free chocolate is acceptable. I was a bit concerned about the actual ice cream because coconut is an ingredient and it can give me an allergic reaction.  I can only guess from the lack of reaction and the fact that there was no noticeable coconut flavour that there really isn’t much coconut in this.  In fact, it tasted like not very nice, cheap ice cream.  A bit disappointing, really.  Why didn’t they use the same recipe as Swedish Glace ice cream, which is made by the same parent company (Walls, well ultimately Unilever) as Cornettos?

May we recommend Booja Booja icecreams instead?

The Coconut Collaborative (Vegan, DF)

It’s always interesting to see which products make the leap from specialist shops and websites to mainstream supermarkets.  The Coconut Collaborative range have certainly done that.  We haven’t reviewed this product before because coconut is an Allergy Brothers’ allergen, but now they are everywhere it seemed rude not to.

Initially, I had several questions about this product:

  1. Was I really reacting to coconut as I suspected during the granola testing?
  2. Why are the naked people in the logo without their modesty leaves on the lemon pot packaging, but the cartoon people have them on all the other packaging?

I discovered the answer to question 1 is “definitely” and the answer to question 2 is “who knows?!”  I actually really enjoyed the Little Choc Pot I tried.  It was very rich and creamy so that’s a pretty good review for something that also made my tongue sting!  Allergy Dad, who is not a fan of healthy(ish) food, also gave the lemon pots a big thumb’s up.  Because I am a numpty/like to thoroughly test things, I thought I would try another Coconut Collaborative product.  I tried the rice pudding, but I didn’t like the texture.  Too few lumps in too much runniness.  Unfortunately, this product also confirmed that coconut has moved from my food friends list to the reacting foes one.  I didn’t try the rhubarb yoghurt, which was a big shame because that is my favourite flavour.  I guess I will have to make my own with Nush nut yoghurts and rhubarb puree.

In summary, there’s a reason why these products have hit the mainstream.  The little pots really are very good!

P.S.  If you have a moment and a Word Press account, would you go to Allergy Wizard’s first ever review and maybe like it.  He would be super excited to have some more readers.  Thank you.

Allergy Mum and the Quest for the Holy Granola

The Allergy Brothers are creatures of habit and so they have their breakfast routine perfectly honed.  Allergy Little has almond milk mixed with chocolate Nesquik powder (surprisingly dairy free), and Nature’s Path Chocolate Munch.  Allergy Big likes to start the day with corn wraps filled with peanut butter and Dutch breakfast sprinkles.  I am still searching for my breakfast nirvana….

I really like Granola because of its versatility.  I like that you can have a bowl of it for breakfast, and then snack on the clumps later in the day.  I decided to start my quest for my perfect granola close to home with Essex-based company, The Moral Munch.  I tried their Super-seeded date and cacao granola.  It’s suitable for vegans, but I completely forgot that the oats were not gluten free.  Delicious and recommended, but not for me.

I decided to take a leaf out of Allergy Little’s book and try a Nature’s Path product, specifically their Nice and Nobbly Pumpkin Seed, Almond and Raisin Granola.  This product is gluten free and vegan.  It is incredibly sweet (raw cane sugar is listed as the second largest ingredient after gluten-free oats), but really quite moreish.  I was happily snacking away on the granola (straight from the packet while watching TV; I am classy) when I realised that I didn’t feel that great and that my snacking hand was really hurting.  I was surprised to see that my skin was having a reaction to one of the ingredients.  I suspect coconut, as it is an Allergy Brother allergen.

I have come to the conclusion that my perfect granola is not out there as a ready-to-buy product.  I am going to have to make my own granola, and so my quest for the holy granola continues…

This post contains an affiliate link to Ethical Superstore.  Clicking on this does not change the price of the product for you, but does help fund the costs of running this website.  Thank you.