This blog is a journal of one family living with high-functioning autism with demand avoidant traits also called Pathological Demand Avoidance (PDA for short).
PanKwake is ten years old now. She was diagnosed with high-functioning autism at the age of seven. But like many other children on the autistic spectrum she has a plethora of other alphabet soup of diagnosis. Our first confirmation of PanKwake’s differences was when she began having seizures at age two and half. It took almost a year and three further fits for them to diagnose her with childhood epilepsy.
But even then another four years went by with her parents begging for further testing/evaluations and assistance. All of the signs of autism were missed. A huge contributing factor to this is the fact that she is a girl…and autism is still seen as a boy thing. After taking her out of school to home educate her and with loads of pushing, we began the two year journey to diagnosis. Along that road we added others such as sensory processing disorder, ADHD and dyspraxia. These days PanKwake firmly refuses doctors, evals and further diagnosis, but somewhere in that alphabet soup are also visual and short term memory issues and dyslexia.
Ninety-five percent (or more) of the time, PanKwake is a delightful and precocious little girl. She is incredibly honest and frank with insights in human behavior that confound the adults. But watch out for that other 2%-5% of the time.
If you have not heard of Pathological Demand Avoidance, well, few people have. And that is why we do this blog. Thing is…when I first did I wanted to stick my head in the sands of denial too…because everything that I read out there was so ‘bleeping’ negative. What life with this form of autism was like…and especially the outcomes that they were seeing in those that they had followed into adulthood.
The thing is…It does not have to be like that.
While our lives and family will never be ‘normal’…whatever that is…it does not have to be the end of the world. We have great times. PanKwake and my partner Cookie Monster wake up to water gun fights. They gang up on me about being ‘obsessed with cleaning.’ We probably laugh…and I know for sure that we love more than those ‘normal’ families. It is not always easy…but sometimes it really really is surprisingly so. But it is always worth it.
This blog then is about our life…the good days, those inspirational moments when everything seems perfect…and the bad. We write this blog to raise awareness about a misunderstood condition. The number of times that we have been called ‘naughty,’ stared out when in our MacLaren Major special needs buggy…or worse…are too many to count.
Equally or even more important…we write this blog to offer HOPE to other families on this journey of PDA and autism. Like a lighthouse in that storm to show the way…to say hey, we are making it…and you can too.
Living with PDA and autism…a world that is too loud, too bright, too smelly…is hard enough. But living with HOPELESSNESS and IGNORANCE is even worse. We hope that we put a ‘face’ on not just our own struggles but the millions of other girls, boys, men and women on the high-end of autistic spectrum and especially those with demand avoidant traits or PDA.