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. 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.

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Light at the End of the Allergy Tunnel

This is a good news post, and the blog I would have liked to read at the beginning of our journey. Things are going very well for the Allergy Brothers at the moment. It hasn’t always been like this. In the beginning, the Allergy Brothers were two very unwell, little boys. Allergy Wizard was so malnourished that he actually wore out his first pair of shoes because he just didn’t grow out of them. Everything changed, after the boys were finally referred to Great Ormond Street Hospital, and we had a path to navigate to get them safely back to health. The trauma and terror of the early days was replaced with the demoralising discovery, that every new food we tried to introduce, just added another food to the list of their avoided allergens.

We were told that the boys would grow out of their allergies by age three. Their third birthdays came and their allergies were still going strong. Then we were told that the allergies would probably be gone by the time they started school, but they both started school with long lists of things to avoid. We all started to give up on the possibility that the boys would ever grow out of any of their allergies, but it is finally happening! In the last sixth months, they have had successful trials of strawberries, citrus fruits and dairy.

In the last week or so, the boys have started eating products made with rice flour. So far, there have been no reactions. This is literally life changing for all of us as it opens up a world of free from products. The photo that heads this blog doesn’t look like much – a scrappily-made fish finger sandwich. For us, it’s a novelty. A month ago, making a fishfinger sandwich would start with activating yeast, ready to make the bread dough, while cutting the fish fillets into goujons. This did mean that the boys had a very healthy diet, but we now have more freedom. Meals can be quickly put together so I don’t have to constantly watch the time to make sure I have long enough to cook before they get hungry. We need to make sure things really are going well, but they might yet have their first meal out…

The Cost of Multiple Allergies

Last year, I saw an Instagram post by AllergyKid2006 that showed the impact of food allergies on budgets. Another family commented that it becomes even more expensive when there are multiple allergies. Those families live in the USA, but it certainly seems like we pay more to keep the Allergy Brothers safely fed in the UK too. I wondered how much the difference in prices is exactly, so I took a notebook along to my last supermarket shop…

Regular Food

Allergy Brothers’ Equivalent

Asda Soft White Rolls £1

Asda Fusilli 45p

Asda Semi-skinned milk 48p per litre

Fairtrade Dairy Milk chocolate (45g) 60p

Old El Paso Regular tortillas (326g) £1.49

Asda Golden Balls cereal (375g) 89p

Asda Sunflower spread 90p

Radox Kids Bath and Body Wash (400ml) £2.50

Pizza and Pastry Multimix £2.99

Eskal Corn Pasta £2.02

Ecomil Almond Milk £2.49 per litre

Kinnerton Free From Chocolate (85g) £1.30

Old El Paso White corn tortillas (208g) £1.90

Nature’s Path Munch cereal (300g) £3.89

Pure Sunflower Spread £2.35

Jason Chamomile Body Wash (887ml) £10.99

It’s shocking to see the differences in prices. This doesn’t include additional costs, such as petrol used to travel to larger supermarkets or the cost of electricity or gas to bake the bread mixes.

In the UK, gluten free foods used to be prescribed by doctors so people with Coeliac disease could access them for free. This has been restricted since December 2018 to just bread and mixes, although, in some areas, even this has been stopped. The Allergy Brothers have never been eligible for any financial help, as they have allergies, not Coeliac disease; and they are allergic to most of the prescribable breads anyway!

AllergyKid2006 linked to an American not-for-profit organisation called the Food Equality Initiative, which provides free from foods to families in need, who have allergies or Coeliac disease. As food bank use soars in the UK and the NHS stops prescribing safe foods, it seems likely that we are going to need a British equivalent to the Food Equality Initiative or see families really struggling to feed their children safely.

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!

One month on…

Wow!  It has been a busy month here at Allergy Towers.  I have been jumping through hoops, like an overexcited collie in an agility competition.  I am really pleased to say that I passed my Level 2 in Food Hygiene and Handling.  We also passed our Food Standards Agency inspection, and got the top grade (5, very good).

20180622_105948We have been testing lots of vegan, gluten free cakes, including a gin cake with tonic icing that I felt the need to test extensively.  Our testing panel have been generous with their time and taste buds, and supportive.  Yesterday, we delivered our first batch to Cornflower Wholefoods, Brightlingsea, Essex, UK.  I don’t know how well the cakes will sell, but we are going to give it our best shot.

The next stage will be about fulfilling our whole purpose.  We’ll be looking at developing relationships with local organisations so we can offer work-related learning to autistic young people.

It’s all really exciting, bit scary, but I am looking forward to seeing what happens over the next few months…

 

 

Is Gin & Tonic Vegan and Gluten Free?

I don’t know about you, but, in these troubling times, I find comfort in the minutiae of life.  There’s nothing like disappearing down a rabbit hole of information to escape reality.

At the moment, my mind is often preoccupied with thinking about new recipes for The Allergy Brothers Cakes.  I am wondering if it is possible to make a vegan and gluten free gin and tonic cake…  Not for the Allergy Brothers themselves, they are a bit young! Maybe for all the parents contemplating the school summer holidays?  The obvious first question is “is gin and tonic vegan and gluten free?”

Gin is, according to the Oxford Dictionary, “a clear alcoholic spirit distilled from grain or malt and flavoured with juniper berries”.  Grain and malt doesn’t sound very gluten free.  However, as the gluten proteins are removed during the distillation process, all spirits, unless a gluten-containing ingredient is added after distillation, are gluten free.  However, some very, very sensitive individuals might react to gin distilled from grain and malt.  In the UK, Chase’s gin is made from an apple base, and not grain.  However, gin is gluten free enough to get a thumbs up from the Coeliac UK website so I feel confident with sticking with my old favourite, Bombay Sapphire.

Bombay Sapphire is gluten free, but is it vegan?  Luckily, there is a fantastic website called Barnivore that allows you to check whether specific alcoholic drinks are vegan.  Bombay Sapphire is marked as vegan friendly.  A very few gins are not because gelatin is used to remove impurities in the filtration process, because honey is added as a flavouring, or because beeswax is used to seal the casks.

Now to check the tonic water!  Tonic water is just carbonated water with quinine and flavourings and sweeteners added.  It should be naturally gluten free.  It should also be vegan.  However, some vegans are concerned that some tonic waters, particularly American brands, contain High Fructose Corn Syrup.  Some vegan writers felt that this was just a bad product to consume, and were concerned about the level of pollution caused by mass corn production.  I am planning on using Fever Tree tonic water, which is made from Natural Quinine, Cane Sugar, Spring Water, Citric Acid, and Natural Flavours, so my recipe will be HFCS free.

Phew!  Gin and tonic is vegan and gluten free!  I think I might have a glass to celebrate.  Purely, for research, of course.