Our ASD Journey in Midlothian

This article is about our family’s ASD journey in Midlothian. With PDA awareness day coming up on 15th May 2019, this piece touches on the highly debated topic of the PDA (“Pathological Demand Avoidance “) profile of Autism.

Introducing our daughter Freya

Freya is a fun loving, “quirky“ girl  who was diagnosed with ASD at age 5 . We consider ourselves incredibly lucky to have obtained an autism diagnosis at such a young age, which is still very unusual for girls . However, as far as our family  is concerned, this is really only half the story!

Freya’s imagination is remarkable and she also presents as outwardly socially very adept. She has perfected the art of copying and mimicking others’ mannerisms and is very popular with her peers.  She can be very controlling with us (her parents) at home, with her peers and sometimes other figures of authority (although she “masks” and tries very hard not to be like this at school).

The curious thing is that many “run of the mill” ASD strategies don’t work with our daughter – in fact, we have had to learn the hard way that using them makes matters worse.  For example, I tried to put a fixed schedule into place for after school but when reminding Freya about the schedule (I would say after playground time we will go home and go on the trampoline now), she would usually become verbally or physically aggressive.  This is when I came across what is commonly known as the PDA profile of ASD on the National Autistic Society website.  I started to try out a set of strategies known as the “PDA strategies”:  For example, when I am too direct and outspoken with my daughter, in order to request her to do something, this can result in violent meltdowns. However, phrasing things indirectly and using language in very subtle ways and also using humour and role play works wonders with our daughter.   For example , instead of  saying “ I would like you to get out of the car “, I now try and  say things like “ I wonder if there is a little girl in here  who might consider moving her little legs out of the car” ( whilst pretending  that I can’t see her )….  Result! Direct, simple instructions – still most often recommended for people on the autism spectrum –  can make our daughter feel as though irrational demands are being made of her and result in a panic– instead  we  now  try to explain and negotiate everything with Freya , so that she can agree to doing things on her own terms.  It really is the ONLY way, and the more elaborate and adult language we use the better!

Freya’s tolerance to demands and expectations (this can be other peoples’ but also her ownexpectations of having to do something) can be fluctuating. It is also not the case that people can never tell her to do something; rather it helps if they scale down on making demands (or disguise them) when her anxiety is high.  Freya has difficulties on most days with being able to do the simplest every day things, such as getting up or eating in the morning or having a shower.  When she is feeling anxious and others insist that she does something, or when she is not feeling in control of situations (and imagine how many such situations like this there are every day– for example, a friend walking off unexpectedly to play with someone else) she experiences the “fight or flight “response, the effects of which can build up over time. Freya’s demand avoidance also means that any boundaries are often impossible for her to accept (unless they are determined by her). By chipping away at using the strategies, Freya’s violent outbursts have now almost become an issue of the past.

The debate surrounding PDA

There is ongoing debate surrounding the topic of the PDA. In a nutshell, academics have so far been unable to produce sufficient research in order for PDA to be assigned a place in the diagnostic manuals. Despite of this, some diagnosticians in some areas of Scotland are choosing to use terminology that reflects the idea of a demand avoidant profile of Autism–and they are doing so because of the helpful management and education strategies that can be used as a result.  In Midlothian, PDA or demand avoidant profile of ASD are not recognised or advised diagnostic terms. However, our daughter’s difficulties are considered to be part of ASD and as such we were told that we could discuss any strategies that are helpful for her (including any of the “PDA strategies” that work).

So what has been our experience?

With regards to professionals’ understanding of my daughter’s demand avoidant traits our journey has been a mixed bag: Professionals recorded some of the strategies that are working well with Freya, but we have also been given some unhelpful advice along the way.  One professional went out of her way to write a letter directly addressed to our daughter after she had failed to attend appointments. The letter offered her reassurance that having difficulties with attending appointments (due to appointment times not being under her control) was really ok. Yet another professional – in acknowledgment of Freya’s demand avoidant behaviours – met up with her on a weekly basis for an entire school term, just chatting to her and building up a rapport, without asking her to do anything in particular. These pockets of understanding and little accommodations that professionals have made have meant a lot to us. A few professionals admitted to not having had any experience of meeting children with this set of difficulties before. Whilst we appreciated their openness and willingness to listen, they were not in a position to offer us the help that we were looking for. One professional with specialism in ASD would not engage in discussing the PDA strategies with us and was unwilling to learn more about them because “PDA does not come under ASD”- needless to say, this was not helpful and we steered away from asking for help.

Freya’s thoughts about the future

Freya has developed good self-awareness of her demand avoidance and has learnt to understand herself better. None of the professionals involved have discussed her demand avoidance with her but because I have been very open about it with her from an early age, Freya can now sometimes tell me when to scale down demands. At weekends, to compensate for demands that she has to comply with at school all week, she sometimes asks to have a “relax day with no instructions “.  She spends a lot of time worrying (at age 8!) about how she will cope with having a job in future as “people will tell me what to do”.  She has recently floated the idea of getting a cleaning job because she likes things to be clean and neat AND… she can be her own boss!  I wish there wasn’t such a postcode lottery and our daughter was profiled for PDA –ASD as I truly believe it would make her future life so much easier, in terms of not only Freya but other people understanding and recognising her needs better as well.

Final thoughts

Whilst our ASD journey has been largely positive so far, we had to rely a lot on our own research and using the PDA Scotland Facebook page, in order to come up with answers. Handing over so much control to your child and having to be patient ALL DAY, EVERY DAY is extremely draining of our energy.  At times we feel very isolated, even in the “autism world”, and we sometimes ask ourselves if parents of kids with ASD traits other than PDA could relate to the behaviours we see.  Not having our daughter’s demand avoidance acknowledged more formally means that I constantly have to worry, for example during meetings, about not being believed or being misunderstood. Not being able to talk about PDA freely with professionals has felt like “walking on eggshells “for fear of offending others, and undoubtedly has added an additional layer of stress to our ASD journey.

You can find out more information on PDA and the PDA strategies on the Scottish Government Autism Toolbox website (a resource to support the inclusion of children and young people with ASD in mainstream education)   http://www.autismtoolbox.co.uk/ by putting in the search term “Pathological Demand Avoidance”.

From parents of a daughter with demand avoidant autistic traits