PDA subtype?

[redmama2]

My son was recently diagnosed with ASD. He’s 6. His evaluator thinks he fits a subtype of autism called Pathological Demand Avoidance. When she described it it fit him to a T. But I don’t know much about it or how to manage it. I’ve done a lot of research online but I know that can be faulty. Anyone else know more about this?

[SecretAgentIEP]

Yes, and I think OT and lots of connection, flexibility and sensory work can help, e.g., childmind.org/article/patho...

What Causes PDA?

The reasons why individuals develop PDA remain unknown. However, some researchers have suggested that for those with PDA, their nervous system triggers their fight or flight response due to potential triggers, including the loss of autonomy and other demands. Other possible reasons individuals with PDA may exhibit avoidance behavior include feeling overstimulated and having difficulty processing information quickly or adequately.

As a result, these individuals may experience anxiety, stress, and an overwhelming need to avoid the requests at all costs despite their willingness to complete such tasks. For a PDA child or teenager, PDA means activities like getting dressed, doing homework, or brushing their teeth can threaten their sense of control and fuel impending stress.

It’s important to understand that for children with PDA, their avoidance is not a choice but a means of coping with overwhelming anxiety and uncertainty.

Despite the challenges associated with PDA, there are a number of strategies that can be used to support individuals with this profile of autism. These may include:

Providing clear and concise instructions in a calm and non-confrontational manner

Allowing for flexibility and choice in activities and routines

Using visual aids and social stories to help with transitions and changes

Building rapport and trust through shared interests and positive experiences

Providing opportunities for social interaction and communication in a safe and supportive environment

[redmama2 in reply to SecretAgentIEP]

I’ve already read that article, but thank you, it was helpful. We’re trying to get him into OT now so hopefully that will help.

[busymom34]

My daughter (age 9) fits this profile as well. I found that things got a lot harder during the 2nd grade (age 8), when coursework starts to move faster and more indepence is expected in the classroom. She couldn't keep up and she didn't have the support she needed. She was in Freeze (tuning out and sleeping) and then Flight (she started running out of the classroom) most days in the latter part of 2nd grade. She seemed to be overwhelmed by expectations and her environment. And the early interventions were to expect her to weather it and the medicate her through it. Which worked very poorly.

I found that the best information about PDA comes out of the UK's National Health Institute and Care Research (nihr.ac.uk/). The US doesn't seem recognize PDA the way the UK does. I also found these 2 books to be incredibly helpful: Heidi Mavir's Your Child is not Broken and Amanda Diekman's Low Demand Parenting. I would recommend the Audible versions of these, especially Mavir's book. Her narration is quite funny, but also note that she does swear.

What made the biggest difference for my child was changing her environment. She is now in a classroom with 9 students across the 3rd-5th grades with a teacher that specializes in ASD (they have another classroom for K-2). There are also 2 paras in her classroom. A para accompanies my daughter and another student when they are in their 3rd grade classrooms for short amounts of time for lesson based learning. But she does the work in her small classroom with 1 on 1 adult support. She has A LOT more support to learn, an environment that supports sensory breaks AND she has a big incentive multiple times a day, Choice Time. If her work is done, she gets to decide what she wants to do for Choice Time. But her work has to be done. She has tested that expectation and has "lost" some Choice Time a couple of times. But she did not like that and quickly decided it was better to do the work and get Choice Time.

This approach at school and Low Demand Parenting at home have made a HUGE difference. Her social development took off once she was able to come out of Flight and Freeze. Last year I was worried about her having friends at all. This year she had 4 different playdates with different friends over winter break. She is still delayed socially, but miles ahead of where she was last year. It's been a big relief for us.

[BrigidsFire]

I can’t comment re parenting, however I have PDA. I’m terrible at doing anything that is expected of me. I will do anything to avoid it. Brushing my teeth has been the worst one. My teeth are awful. I also struggle with showering etc. However I’ve learned that these things have to be done to get on socially, and so I do them most of the time.

Try not to worry too much. Don’t put on too much pressure as that causes way too much anxiety. My niece is the same as me, and we are both doing well in life (I’m married, have a child and a grandchild).

I agree with the fight, flight or freeze reactions. Working on social development as a whole will probably go a long way to help.

[Mybestfriends]

Aswell as all these comments, you could look up on Facebook the Nature Nurture Programme, PDAers too. Some great info, day to day things, other links, info lived experiences.

[redmama2]

I’m not in the UK but thanks