Activating vs. Accommodating

It has been over a month since I've shared an update and so much has happened since then. It's been quite the whirlwind and it seems like it will continue to be that way at least until the end of the year.

I have attended two CAMPS (Caregivers of Autism Maximizing Potential), one in Sheboygan with a very close friend, and then as a mentor to the very first session held in Eau Claire. Two very different experiences with similar information shared, however both filling my cup with knowledge and more homework assignments. I am one who takes information given to me and then deep dives into the resources and background of that information, sometimes too much for my own good. I feel like there is so much yet to learn about Autism Spectrum Disorder that I need to know it all otherwise I am failing my kiddos. So thanks to our waiver program, I am now the proud owner of 4 different books to add to my ever-growing list of homework, because I have all the time in the world to read right?

One of the topics that came up and really plays a factor into my children is that of Pathological Demand Avoidance (PDA). It is not part of the DSM-5 in the United States (UK only so far), but is a subtype of Autism Spectrum Disorder and honestly explains so much of many kids' behaviors. Below is an insert from the PDA Society of the UK.

Autistic demand avoidance

Autistic people may avoid demands or situations that trigger anxiety or sensory overload, disrupt routines, involve transitioning from one activity to another, and activities/events that they don’t see the point of or have any interest in.

They may refuse, withdraw, ‘shutdown’ or escape in order to avoid these things.

Helpful approaches include addressing sensory issues, helping individuals adjust to new situations (for instance by using visuals or social stories), keeping to a predictable routine, giving plenty of notice about any changes or accepting that avoiding some things is perfectly acceptable.

Demand avoidance in PDA

With PDA, these same types of demands or situations may be avoided for the same reasons.

However, pathological demand avoidance is all-encompassing and has some unique aspects:

• many everyday demands are avoided simply because they are demands. Some people explain that it’s the expectation (from someone else or yourself) which leads to a feeling of lack of control, then anxiety increases and panic can set in

• in addition, there can be an ‘irrational quality’ to the avoidance – for instance, a seemingly dramatic reaction to a tiny request, or the feeling of hunger inexplicably stopping someone from being able to eat

• the avoidance can vary, depending on an individual’s capacity for demands at the time, their level of anxiety, their overall health/well-being or the environment (people, places and things).

A PDA profile is also a spectrum and presents differently in different people. Some individuals may have a more externalized or active presentation – where demand avoidance may be overt, physical, aggressive or controlling. Others have more internalized or passive presentations – where demands may be resisted more quietly, anxiety is internalised and difficulties are masked. Many may have a variable presentation, depending on other factors like how well they are managing at the time, the environment, the setting, their age and so on.

PDA demand avoidance isn’t a choice and is lifelong – it’s seen in infants and remains part of the experience into old age. With understanding, helpful approaches from others and finding self-coping and coping strategies, it can become more manageable.

https://www.youtube.com/watch?v=CCsfKxyuH1I

A lot of it starts with the language we use to communicate with our kids. Low-Demand Parenting and declarative language vs. imperative language are both ways of connecting with a child with PDA.

Declarative language uses explanation to discuss reasoning for doing different things. An example would be instead of "Put on your coat" which uses imperative language, it would be saying "It's cold outside so I'm going to put on my coat to stay warm and healthy". Instead of demanding what it is they child should do, it is using descriptive reasoning as to why they should do something. Another example would be instead of "pick up your toys" which again is a demand and using imperative language, "I'm going to pick up these toys as I'm afraid someone might get hurt" puts a low-demand on the situation and again uses declarative language.

It's a whole change in perspective from how we would normally parent and speak to a child so it's a lot of work. It's rewiring our brains to be accommodating to a child which in most cases our parents NEVER did. But in these cases with a child who displays a PDA profile, that type of demand would activate their fight, flight, or freeze mechanism, causing a melt down or shut down. Many attribute a child with PDA to be a "Jekyll vs. Hyde" type personality. A trigger of any sort can cause the child to go into the Hyde part of the personality causing the flight/fight/freeze response. This is where that low-demand comes into play. I struggle with it because I grew up in a family that was demand based, you got told what to do and you did it for fear of consequence and now I have to completely rewire my brain to accommodate a different language and thought process.

I'm going to create a resource page that will have links to different Instagram's, podcasts, websites, and books that can help guide parents and family members in the right direction. This has been compiled by others and added to by myself and will continue to build as I learn of more resources. Life is ever-evolving as so is the world around us. To use my favorite phrase: MORE TO COME!