Dear Meghan: My 4-year-old son was just “diagnosed” with pathological demand avoidance (PDA). I use quotation marks because my understanding is that it isn’t an official diagnosis in the United States. I am reeling. I feel so sad and am grieving the expectations I had of his childhood and, frankly, his entire life. I don’t even think he’ll be able to attend public school.
I also feel very alone; no one in my life that I have talked to has ever even heard of PDA let alone understands or can empathize. I read online somewhere that having a PDA kid is “like parenting on hard mode,” and I just feel like this is so freaking unfair.
Do you have any thoughts on this disorder? Or words of encouragement? I am in a place of real hopelessness at the moment.
— Hopeless
Hopeless: I am so sorry for this disappointment and grief. I know (and many other parents do, too) the feeling of having the rug ripped out from under you with a diagnosis, whether psychological or physical. We all have dreams for our children, and it is natural to feel alone, scared and hopeless.
It is difficult to say a lot about a PDA diagnosis, because U.S. mental health professionals haven’t yet formally recognized it. Being given a diagnosis with little to no road map, unsurprisingly, leaves people feeling alone, frightened and hopeless. For instance, if your son had been given an autism spectrum disorder (ASD) diagnosis, there would be a couple of paths from which you could choose. There would be treatments like occupational, exercise and speech therapy, scripts, as well as groups of people who feel that ASD is simply another way the brain is made that doesn’t require any outside interventions. You could easily find a community of other parents whose 4-year-olds also have that diagnosis, and these parents could share stories of success, heartbreak and hope. You would find podcasts and books covering every conceivable facet of ASD, and you could begin to imagine a future where your son would thrive, despite the new challenges.
Instead, you have a diagnosis that isn’t official or recognized by the people in your life. And that, my friend, is heartbreakingly hard. Not only do you feel unsupported and unseen, but PDA has symptoms that are both physically and emotionally exhausting. One of the challenging aspects of parenting a child with PDA is that strategies that work with many children will not work with your child. Direct requests, commands, demands and even gentle asks will trigger the child’s demand avoidance. You need to remember: It’s not that the child “won’t” obey you, they can’t. Their mind and body are thrown into an anxiety loop that seeks and fights for control. This loop of anxiety-demand-defiance-more anxiety often creates more isolation as the parent doesn’t feel that they can go about their day “normally.”
You have every right to all of the emotions you have stated and, while you navigate this new challenge, I strongly suggest finding your own therapist who can help you grieve the life you thought you were going to have. Please find a therapist who doesn’t question this diagnosis or your parenting skills; you need empathic listening and support right now.
As you find your footing, you will begin to assemble your care team. I don’t know who diagnosed your son, but because PDA isn’t officially recognized, please try to get additional screening for your son. If As you find your footing, you will begin to assemble your care team. I don’t know who diagnosed your son, but because PDA isn’t officially recognized, please try to get additional screening for your son. If […]
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