Are you living with a Label? | Christine Duff | TEDxTralee

[Music], [Applause], how my son sees the world, has encouraged and enabled me to see, others and their world, in a whole new light, especially those adults that are, easily frustrated, at times awkward, are just really rigid in their thinking, we all know a few of those, my son is 11 years old, and the journey that i've been on so far, with him deserves way more than just a, ted talk, possibly a talk show, after all, if you dream it you can do it, today, i'm going to test your thinking, i'm not a teacher don't panic, i am however a mom, making a point, if i was to ask you what does pda stand, for, what would you think, the most popular answer according to, google because we all love a google, especially when it's something we, believe to be absolutely terrible, is public display of affection, that's not so terrible is it, however, when the label pda, entered my life, through my, vibrant, intelligent, at times stubborn son, i quickly learned, that pda stood for, pathological demand, avoidance, absolutely unheard of, pathological demand avoidance is a, subcategory on the autism spectrum, and it was first discovered in 1980 by, elizabeth newson, the autism spectrum is sort of like a, big bright colorful umbrella, and pda is simply one of many, magnificent raindrops that falls, underneath, pathological demand avoidance is the, anxiety driven need to always be in, control, isn't that every man, imagine walking on eggshells around, someone every single day, they're like an active volcano, waiting to erupt into an explosion of, destructive behavior, but they can shower you at love and, affection the very same day, this was a very interesting discovery, during my son's first week at his second, preschool at the tender age of four and, a half, the mornings would start off full of, excitement and enthusiasm, i would walk him up the three steps, through the two white doors and into his, classroom, bye mom see you later, his little voice so sweet and innocent, obviously i took a sneaky peek in the, classroom window just to make sure he, was okay, because we do that don't we, we believe that our children need us 24, 7., a relative of mine working in a school, once said when he starts school expect a, few phone calls, whatever did she mean, by 10 am, the phone rang, hi christine, can you please come and collect your son, he's flipped a table he's broken a few, things and we can't calm him down and, it's really distressing for the other, children, the uncertainty and stress from that, teacher was oozing through the phone, by day four, as i sat in my friend's kitchen crying, in sheer frustration, the phone rang again, i imagined my future, if my little boy can flip a table at, four, what's he going to flip at 14, or 24, will it be me, will it be his sister, if he's breaking small things now, what could he break when he's bigger, taller and stronger than me, i dried my eyes, hugged my kind supportive friend those, friends are invaluable by the way, and i made my way to the school, the five minutes in that car seemed, extra extra long and lonely as i just, kept thinking of answers to help my, little boy, now you could call it a light bulb, moment, or a bit of intuition, but i knew what i needed to do, as i apologized to his teachers yet, again he held my hand and we walked, along the gray paved path exiting the, school, sorry mom he said from a side-eye glance, what he didn't know, is i love a challenge, and i too was once a mischievous, inquisitive, slightly demanding child, so this was a challenge i was going to, accept fully, i didn't exactly have another option, really did i you don't get a refund with, children so i couldn't exactly hand them, back anywhere, easiest way to understand pda, is the jekyll and hyde personality, if you can imagine you have two people, living inside you, both of them are battling to escape, every day one more than the other, it's like flipping a coin you get heads, one day tails the next you never know, what you're going to get, but, it is during the unpredictable days, that you actually find a level of, predictability, by the time my son had reached eight, years old, we survived through many experiences, locked in bathrooms, opening upstairs windows trips to a e, one trip in particular involved an x-ray, to see if the toy he claimed to have, swallowed was stuck inside him, now that toy was found, but not inside my son, oh no, that toy was at home underneath the, blanket, and the trip to amy dare i say it, was a pre-planned trip by my son, because he wanted to see a picture of, his insights, he made some friends that day as well, one child had a sweet up their nose, the other swallowed a coin, i remember one summer evening shortly, after that, we were sat cuddled on the chair in the, kitchen, and he looked at me and he said mum, i can feel how sad some people's hearts, are, and how angry their souls are, and it makes my body feel so, uncomfortable, whoa, i had two choices in that moment, one dismiss it as absolutely ridiculous, or two, understand the depths of this feeling, within my son even further and support, him to strengthen his inner peace, after all it had been about four years, of alternative and complementary, therapies and this level of awareness in, my son at eight years old was evidence, of the work that we had been doing, together, the anger and frustration had melted, into creativity, laughter and self-awareness, although at times his humor is, questionable, like the time he left a drawing on his, teacher's desk, of a pair of cheeks, not the cheeks on your face, the cheeks you sit on, let me ask you this, what did all the generations before now, do, that may have had a diagnosis, of pga or something like that and they, never knew, those that were told they were bold and, stupid and no good in school, the relative that shouts and roars and, storms off if they don't get their way, the person that sabotages others special, days, the people accused of being narcissistic, could they possibly be autistic, a street angel house devil is another, fine description, i'm sure by now you can all visualize, that someone in your head, my son is a master manipulator, but i have become a chief negotiator, he can avoid the most basic request such, as, put on your jacket no my hands aren't, working today mom, i'd like to think he's not intentionally, trying to stress me out when he does, this, but, it's one of the ways he copes it's one, of the strategies he uses to feel safe, within his own body, you see, the anxiety that is driven from pda, it's like fizzy bubbles in a drink, they're always there, by educating him on this, he realizes the things that make him, feel extra fizzy, are extra flash, pda, is sort of like, learning a different language in another, country, you would prefer if they spoke your, language, but you actually gain so much more from, understanding and learning theirs, by replacing can you and will you with, could you or, would you in a softer gentle more, inquisitive tone of voice, it works wonders, during this year's easter holidays, my son decided he was going to learn to, cycle a bike because at the regular age, of four or five it was an absolute no no, no, so, while most of the country were at home, sanitizing and staying in their bubbles, i was on the street telling my son he, couldn't cycle, you'll understand why in a moment, as i said the pga brain it works with, indirect and opposite communication, so i've noticed a little bit of reverse, psychology goes a long way, at the park however, i momentarily forgot my indirect praise, and i praised him directly i told him he, was doing a great job and down the bike, went in a huff, so after a quick discussion of me asking, him what he feels would work best he, said mom, tell me i'm no good tell me i can't do, it, okay, his grandad was well on board for that, and he found delight and humor shouting, across the park you're absolutely, useless you can't cycle at all you never, do it, much to the shock and horror of all the, parents and other passers-by, my son cycled effortlessly around the, park and he was beaming from ear to ear, you see in that moment, i gave him back the feeling of control i, didn't demand he do it, therefore he felt safe and comfortable, enough to want to do it, does my son know he has pda of course he, does he was there for all the, appointments, did i sit him down and list off all the, side effects like you would with a, prescription, no, this was simply a label, it was our choice on how we were going, to choose to live with it, i chose to see my son for who he is, by involving friends, family, and the teachers i have created a, support network, there's continuous communication between, us, after all if you can manipulate people, at that age, it's good to educate others on it, i'd love to share three of my top tips, with you on what has and is working in, our life pda or not, one, accept the jekyll and hyde personality, realize they are just one magnificent, person, it's not your job to change them, it is however your responsibility to, change your reaction on how you respond, to them, it's so easy to have a big temper, tantrum when they're having a big temper, tantrum but trust me you will both be, deflated defeated and exhausted, i learned the hard way that if i'm not, managing my emotions and my triggers, how is my son ever going to learn how to, manage his, be open-minded to all levels of support, and therapies, add in a little bit of humor along the, way, it helps during the last predictable, days, three, realize, you will always get back the work the, effort and the commitment that you put, in, by self-regulating your emotions, and finding your inner peace, you become a catalyst for others, pda might mean pathological demand, avoidance, what i've learned it also means pretty, damn amazing, i'd like to leave you with this final, point, and ask you, what new beginnings now await you and, all the difficult characters in your, lives, aladdin from the disney movie simply, called aladdin, sang it best when he reached out his, hand inviting jasmine to step on to his, magic carpet and explore the world, through his eyes, a whole new world a new fantastic point, of view, thank you, [Applause], you