What not to say or do to a child with PDA

[@ausomeF]

"Stop trying to make us conform or fit into the system, because we're here to change the system". Love it.

[@cosmicraysoflight]

My favourite bit too!! I think the people with autism, adhd, pda and more are here to do just that....end the madness of authoritarianism

[@muteqx]

cosmicraysoflight yes, totally agreed! We who don't fit in have an important role to play! I believe we have an as-yet unrecognised kind of "superpower" that just requires a little grace.

[@colleenmarie80]

Luv that SMILE u make when u finish that quote part up - Perfect✨It takes devils to change these systems - exactly what’s needed...

[@sunlight8299]

My thoughts/reaction exactly. I watching these videos because I think my boyfriend may have PDA. It's been really helpful/useful even if he doesn't.

[@ConnieJooste]

Hope you made it better

[@itsgonnaBmay]

With the compliments thing, I don't have an issue with "I like your top" or anything- in fact, I quite like it. The only time I have issue with compliments is when it's reinforcement for doing something they want because I can tell they're just trying to make me do it more often

[@alanz0812]

YES. This is so my daughter. I was trying to explain the difference recently, and that is totally it.

[@HarryThompsonPDAExtraordinaire]

Exactly!

[@fedoramcclaren4294]

this is it right here!!!

[@amandamcnamara1617]

Interesting, because this is what I've heard about how to positively reinforce a child's behavior. But, having said that, I always hated compliments as a child, but I got more compliments for innate qualities. An old man, a stranger, told me I was a pretty little girl when I was about four, and I stuck my tongue out at him, because I got a weird vibe. Looking back, I think I sensed he was a creeper. Of course, I got in trouble for being rude. The most common compliment I got as a child was that I was so smart. This mainly came from my family. The kids at school knew it too, but many were put off or jealous. But I was never reinforced for effort or hard work. As a result, I ONLY do well in school. I've never been able to keep a job. It sucks, because I can't do much if I'm broke. I hate it. I'm trying to get disability, but in my list of diagnoses, PDA is not included, and I think it should be. I want so badly to be able to work toward something, but the command, "get a job!" does not compute. I don't know what to do. There doesn't seem to be a treatment for this, and I am loathe to think that way anyway because, as you said, we are here to change things. I just don't want to live off the system indefinitely either, but I need something to start with. Life is very frustrating. I can't even get proper therapy. What is a person with this condition supposed to do about survival? I'm 43 in 2020 and just figuring out that I think this is my diagnosis, with the help of my even smarter little sister. My situation is ok, but comes with a lot of abuse due to lack of understanding of the way I am. So I need to change my situation, which requires dealing with a lot of high pressure demands. The cost of living is very high where I am, too. Anyone who is coping with this have any ideas on how to survive?

[@MelissaThompson432]

@@amandamcnamara1617 I always hated "you're so smart!" because in my mind there's a "but--" "...but you don't live up to your potential!" for instance.... I really hate that one. As for how to break the demand when it comes to working, idk because to me work is only the means by which I get paid; nothing to avoid. I'm at retirement age now, though, so I legally get to stay home and do nothing.

[@bethanyramsey7063]

My son has opened my eyes and taken the veil of "just because" away.... what an incredible gift from the human that I love with my whole heart! Soppy? Perhaps... life affirming... absolutely! ❤️

[@dementismulier7438]

I have a 8yr old asd daughter who has shown strong signs of being PDA for a few years, these are very informative videos, thank you! We live in Derbyshire and PDA is ignored / not recognised as being part of the spectrum. ( yet Nottinghamshire, the county next door, have their own PDA center!) Ive been pleading with my daughters specialist for years to organise the means to have her diagnosed, not for any other reason than the staff at school being able to understand, learn and be able to teach my daughter in a way that will benefit everyone. None of the school staff are trained for PDA and struggle daily so they are having to self train via the internet, especially my daughters personal teaching assistant. These videos you are making will help them get a much better understanding of PDA.

[@thetruthergirls]

Thank you for making this video. My son has PDA and we constantly deal with people calling him a brat or saying I must be parenting him wrong. But PDA kids are extremely challenging, as you know! Seems I am already doing most of these things you say, so it is good to know I am taking the right approach because I get so much negativity from people who don't understand.

[@Natasha-li7su]

Bribery, guilt-trips, carrots and punishments have been avoided in our house! Humor, help and empathy work best for us. Sending you oodles of positive vibes.

[@alanz0812]

Thank you for this. Sometimes there are necessary tasks that HAVE to get done for my child's health and hygiene, such as tooth brushing (a struggle), bathing, going to the dentist, etc., yet they are met with major resistance and defiance. In fact, I would say that those daily tasks are our biggest struggles. A video on how to handle these "non-negotiables" would be so helpful.

[@colleenmarie80]

Honestly, personally, I don’t know that there’s a rule written in the sky stating there’s a list of non-negotiables...Perhaps from your perspective give, but not everyone shares the same perspective gives, as we readily see from examining all the various cultures and differing values, goals, faith/religions, and so on...

[@colleenmarie80]

What I’ve found helpful is to forgive that list, relax and honestly forget about it (or PDAers will still pick up on your “unspoken” anxiety about it) and let live, “what will be, will be” (as Debbie Reynolds sang), and you never know, your PDA Er may just become better than anyone at those on the list, or maybe not...but he/she will find her or his pathway. Trust me, they already know brushing their teeth may have health implications, social implications, etc and that’s demand more than enough - and perhaps what keeps one from “performing” the task...Take the pressure off yourself, for you LOVE your child. That’s all you have to do - you’re a wonderful Mom for caring if no one has told you that lately...It’s a rare thing we PDA mums come across - 💛

[@domm1341]

On tooth brushing, have you tried dipping the toothbrush in mouthwash? That seems to work as a compromise for our daughter. She also sometimes uses a flannel to clean her teeth. We struggle with bath time too. No easy answers there I'm afraid. Same with hair-brushing, although we think that this is less about control and more to do with her sensory processing.

[@wolvesthatcrow8242]

Hi! :) I'm an adult with autism/PDA. This is a super long post, but I wanted to answer your question! :) As a child, I found being forced in to hygene routines (or any kind of routine) incredibly stressful, even when I knew it was good for me. When I got to the age where I was expected to do it on my own, I would predend to do it, and lie about it later and I didn't know I was allowed to ask for help. This is obviously not great, and I imagine it would be very frustrating as a parent. But remember - everything is negoitable, and every child makes progress at their own pace. You could aim for teeth brushing once a day instead of twice a day, or 5/6 days out of 7 to start with. Use very gentle encouragement, but without the guilt. So avoid asking your child to make you proud, as it will cause them distress as they try to meet your expectations. Rather, encourage them to find their own self-satisfaction and encourage them to be proud of themselves for overcoming the distress of the situation. Encourage them to find some sort of enjoyment from it, and be sure to put the important activities inside a routine with activities they enjoy. The goal is to remove as much anxiety and stress from the activity as possible, which is why they are reluctant to engage. This might just mean sometimes letting them not do what you want them to do. Building trust, offering detailed explainations, and being patient is key. Being consistent will mean they will be so much more likely to follow your instructions in the future. If they continue to make excuses/avoid doing the task, joke with them, laugh with them, and try not to get angry. They will much more likely cooperate if they're having fun, or if they know they won't be made to feel guilty/ashamed of their behaviour. Offer to do the task with them, or to supervise them and offer encouragement. PDA is increasingly known as a part of the Autism Spectrum Disorder, and it means every person with it is completely different. I personally love being told when someone is proud of me, or when I've done a good job, so knowing I would get praise after doing something would encourage me. Some kids/adults might find this patronising or stressful. Even knowing there is a task coming up, later in the day, or the next day, can cause me overwhelming distress. Even placing my own demands on myself, to do the things I really enjoy causes me extreme distress. Routine is key here, as it's the uncertainty and expectation of what/when/where something is going to happen which causes the distress, even if it happens regularly. Try to remove any ambiguity, or uncertainty surrounding the task. Also making the tasks worthwhile to the child will help them find reasons to want to do it. Talk to them, and ask them what about the acvitity makes it stressful or difficult or annoying, and then try and remove those stressors from the activity. As Harry mentions in the video, encourage the benefits of doing the tasks. I love to learn and I love to know the reason WHY I have to do something. Explain to your child, WHY they need to do what you want them to do and the benefits of it. Making the bed makes it cozy and inviting - brushing your teeth keeps them squeaky clean. If they don't like your reasons, help them think of their own. Offer rewards, but make sure the rewards are something the child will be motivated by, not generic rewards. It doesn't have to be new toys, or sweets. It could be being read to, going outside, an extra long cuddle, or engaging with their favourite activity. Try reward charts. Reward charts work for all kids, even adults use them, and a lot of ASD/PDA kids are visual, tactile people. Think of ways you can turn the chores in to fun, rewarding activites. People with PDA have obsessive behaviour which can be used to your/their advantage, and they can have very particular interests. Kids with PDA are great at copying others' social behaviour, even if they don't understand it. For example, if you brush your teeth at the same time and turn it in to a fun game, they will be likely to copy you, and they will be more likely to want to do it again next time. I can overcome obstacles which feel insurmountable to me, if I know I get to do something I really, really love at the end of it. Let them bring teddies to brush their teeth, too, and if you have a pet who needs their teeth brushing, maybe get them involved. Turning a scary obstacle in to a fun, family game may help remove the anxiety. Creative, lateral thinking is needed. A great example of this is the way doctors have been giving kids scary MRI scans, by turning them in to interactive adventure games. You could try this on a smaller scale. Most of all, let them know if something is too hard to do today, it's okay and that they're important and that you love them. It's ok if something takes them a long time, and it's ok if they feel too sick to do it, too. I wasn't diagnosed until I was an adult and it's been a very difficult experience. The stress makes me feel very sick. Teaching them to value what they are capable of doing, and to value themselves will really help them later on, even if they still struggle to do these 'every day' tasks. Let them know struggling with daily tasks does not make them stupid, and encourage their growth in other areas, too. These situations will always be stressful for your child, even as an adult - the goal is to try and limit the stress and make it enjoyable rather than scary. Try not to take things too seriously, or be too set on what HAS to happen, and have fun, because autstic kids can be the most fun, most creative, silliest kids ever. Making life fun will mean your kid will find life much easier in the future. I hope this helped a little! :)

[@helenlasham]

Alexis Lanzillotta EEEEEK, Non Negotiable!! My sons 15, I cant remember the last time he brushed his teeth, had a shower when I said I’d pay for his hair to be cut if he had one. Negotiation, not taking it personally, had to learn what works for us

[@vanillasommer7582]

OMG, I LOVE this...! You're giving me goosbumps...!!!! Thank you so much! I'm a mother of a boy almost 13. I really, really love the words in the end here. My boy is now homeschooled (unschooled) since a year, and he's happier than ever.

[@KentWilke]

Hi Vanilla, considering homeschooling our 15 year old boy with PDA and would like to hear any advice you may have after doing it for almost a year.

[@Thehealthheretic]

What I love about my pda son, is how he constantly calls me to account for things I ask him to do. He always sees through any BS. He has made me a better Mum and a better person. He has taught me so much about myself. He is an inspiration to me 💕

[@HarryThompsonPDAExtraordinaire]

Thanks for sharing, midget medusa, this was wonderful to hear!

[@nicnac7837]

A friend sent me a link to this video. OMG you have just explained my 5 year old little girl. Everyone thinks I let her get away with so much and I'm crazy, but everything you have said is how I ask people to treat/deal with her. After 1 hour of watching your videos I wish it compulsory for everyone to be able to see this! So many people have never even heard of PDA, please keep sharing!

[@iainwhite3476]

It’s amazing Harry how you can step outside your own mind and help us parents understand PDA. You can recognise the meltdowns and unreasonable behaviour and rationalise and explain how to communicate better 👍👍

[@LoneJensenArt]

And the penny drops. Ephiphany. I definitely have PDA myself.

[@Wildernessadventuresoz]

What stuck in my head was we’re so inquisitive! This is my son. He is a doing, making child his brain is in constant motion of figuring his world out. He is going to be homeschooled next year and I’m going for the learning through living

[@witmercl]

Thank you for sharing this! We don't have the PDA distinguished diagnosis type in the US, ASD is now an umbrella term for several, but wish it did. "Because we're here to change it", so great!

[@jessbee3802]

Your videos are fantastic at giving a significant insight into alternatives in managing/coping/relating to those with PDA. Being fully aware of the challenges and hardships that individuals with PDA face in day to day life, hearing your stories are a tremendous help in having a deeper understanding of the thought process and better ways to avoid distressing situations. This could come across as intrusive, but if possible could you talk about coping strategies or ideas of how to better manage 'melt downs' or other anxiety driven incidences, in your experience. Thank you so much!

[@Evan.harrison]

Thank you Harry, for your honest insight into living with PDA. My 9 year old son, is currently waiting for an assessment, so we can finally get an official diagnoses! My family and I are trying to understand this condition, so we can better understand Evan. The things you discussed, really struck a chord with my son's behavior and how wording things the correct way, so he doesn't feel we're barking an order at him and letting him feel it's his choice. Videos like this really help, as who better to advise about living with PDA, than someone who is living it day after day. As parents, we just want our children to feel safe and happy, but it's difficult, when school etc, puts children into an uncomfortable environment day after day. Evan's school is very supportive and understanding, but this doesn't stop children making mean comments about him having 'mental problems' and being 'weird'. Now he's 9, he already has an awareness that he's different and this doesn't help his emotions. Whether or not you have a child on the autism spectrum, people need to educate their children, that as well as physical disabilities, there are emotional ones (if that's the correct term??!!), so that children don't then target and bully people who are 'different'. I think the worlds moving forward with awareness, compared to what it was 20 yrs ago, but we still have a long way to go. It's also about not being judgemental towards parents, as I'm sure people have looked at my son and thought that he hasn't had boundaries or discipline and that I'm a bad parent. This really hurts, as I know my husband and I have done and continue to do, our very best for all our children. Thank you again.

[@lianaeve]

So insightful Harry. Like you said, one morning I woke up thinking 'the irrational won't respond to the rational' and as a mum it has transformed my own inner calm and control during my 3 year olds aggressive meltdowns and dysregulated moods. Even though I knew not to try conventional parenting I would implicitly head in that direction until I learnt to purposefully remind myself of this truth. The challenge is trying to explain this to every other person he has contact with- thankful for this video which I'll be using as a tool!

[@samanthayoung5569]

Harry I am so very grateful for your commitment to producing these vodeos. I have a 13 year old girl with pda and your videos have appeared at a time where I needed reminding of my daughter's needs. thank you thank you thank you !

[@RachelGerrard]

Harry this is fantastic.

[@judolady73]

Well done. Great video. Helping with chores I found misery likes company lol. We will do a lot of stuff if someone suffers along with us. No wonder I felt so different for so long, mid 40s now feeling pretty down and useless as life isn't very forgiving to people who only do what they want and struggle with anything more. A mum at my kids ASD support group suggested PDA to me when I said I love to volunteer but run away and don't go back if I'm told I'm NEEDED.

[@trishferguson5545]

It does my head in that the logic of cooperation in a family means nothing to our boy, 13 years old. E.g. "Can you be ready to leave by 2.30 so we can be sure to arrive on time" turns into a battle because he thinks 2.30 is too early to leave, no matter how many times leaving at 2.30 makes us late! Stress all round, other knock on consequences, no contingency time for traffic etc etc. Can you explain that one? And how to 'get round' that?

[@HarryThompsonPDAExtraordinaire]

trish ferguson he's picking up on YOU wanting to leave at a certain time which will make him not want to leave at a certain time. Whatever the activity is make sure it's something he's interested in.

[@rozellefaulkner3780]

What about the things that he isn't interested in, but HAVE to be done? E.g. school, medical appts etc. Sadly, an awful lot of life's essential activities are things we might not want to do.

[@HarryThompsonPDAExtraordinaire]

Rozelle Faulkner very good question that I'll answer in my next video :)

[@EileenFlores]

@@HarryThompsonPDAExtraordinaire which video is it, please?

[@danashaun050105]

I plan on watching all of your videos. It really is helpful to have someone to explain it who has experienced it. I do question the thing with compliments. Personally, I don't mind compliments when they're real. It bothers me when compliments are used as a way to manipulate tho. My kids all like compliments. Sometimes my 5 yo will not even look at me when I'm speaking to him. But if he's paying attention, he responds well. He will smile, give hugs and his little cheeks turn red. He also compliments his sisters. I don't exaggerate or lie. I say something like, " You are so great at art. I admire that about you." I think these compliments are important, maybe even critical for these kids because they usually hear way more negative comments from society than neurotypicals. They need to hear more positive things about themselves to help build self esteem. That's just my opinion tho.

[@123weaver]

Just a couple of little things to remember.. 😅 I’ll do my best!

[@AnneClay]

This was great... you described my daughter to a T but for some reason I took it better from you! Thanks!

[@cassandradavies7956]

Thank you Harry for another great video!!

[@zalzalahbuttsaab]

Thank you for sharing this insight into the world of people with PSD. Given that I have Asperger's, I can't imagine how difficult it must be to live with such a condition as PSD. It sounds like an absolute nightmare for both the sufferer and those connected to the sufferer. Do people around those with PSD constantly feel they are walking on proverbial eggshells? How do people with PSD manage to function in say a job role or just as part of society generally? It sounds very debilitating.

[@fedoramcclaren4294]

As far as working...i would love to hear more experiences about a person with pathological demand avoidance at work... From my experiences, i would need to do jobs that i have a passion in, where no one is looking over my shoulder...

[@kimikohoshinabushby7093]

Oh Harry, thank you so mush for making this video. It was incredibly useful advice for me as a mother!!! for my boy. Yes, day today every day is difficult not say what to do to tell to my boy, its always causing an argument. I feel a bit closer to his feeling and thoughts now. I really want to see you.......I wish I could, I really want to help and make my boy's life easier.

[@fedoramcclaren4294]

I actually send this video in order to explain to people what i am going through... It is highly appreciated...

[@justinsalinger2126]

Thank you.

[@jonaheifetz]

great video! is there a sequel with the title "what to say to a child with pda"?

[@imagineme9]

Brilliant video!

[@colleenmarie80]

imagineme9 purple rain “Er it rain harder come on!

[@leeoconnor123]

As a parent to a teen who has a PDA profile I can understand these do's and don'ts now, you can get used to it, however, take this to anyone outside our household and it completely falls apart. So much so, that my child will not converse with anyone visiting the house. Ultimately, there is always something they will say or do that is wrong and they may listen about that one incident and what they can do differently but after that one incident they don't want to know any more. How do other parents manage this? None of our family members can be trusted on this topic.

[@drbrog190]

A physiological response. Exactly!

[@cherylgriffin2989]

another fantastic video. your explanations are spot on. thanx

[@fredmuppet3077]

I love this video. It's spot on. Taking this on board for my son. Thanks :)

[@carlystewart8166]

Going to show this to my daughters school.Thank you for teaching us all how a person with pda feels.What you have described is my life as a child.Im 35 now.My daughter has pda and my son aspergers adhd.✌️💜

[@lucyfoster4082]

This is very helpful. Thanks man.

[@guest4320]

This was very useful and I do actually have PDA. Thanks for this!

[@guest4320]

PS thanks for the ❤

[@elliotrose8836]

Another great video mate, thanks for this :)

[@bertrandjenner411]

I love your videos, being a parent of a unDx PDA boy (HFA so far). The last part of the system made us laugh hard 😝

[@deedee4335]

You explain my son to a t. ❤️

[@ALLAttuned]

❤️❤️❤️❤️

[@dave-cripps]

It seems like PDAers are just better at or more direct at calling out bullshit

[@danfrost9492]

May I ask a few questions? What happens when there literally is no choice? How does it work if there is an adult and child who both have PDA, would there be continuous conflict?

[@theedenadventures]

Ha the point you made around 3 mins in. All I hear all day “what if, but what if” Don’t touch the cooker it’s hot But what if I do? You’ll burn yourself But what if I want to burn myself? It’ll hurt and you’ll go to hospital What if it burns you instead of me? What if you catch fire, what if you die?” 🤯😳

[@TheSnuggleFairy]

What about when someone with PDA makes up intricate lies to avoid things, including things they have said themselves that they want to do?

[@HarryThompsonPDAExtraordinaire]

TheSnuggleFairy It simply means they do not want to do the thing they're trying to avoid.

[@HarryThompsonPDAExtraordinaire]

TheSnuggleFairy He may be pretending to want to do something in order to trick you. In the mean time he could be planning his next step

[@mercenary1881]

Sounds like narcissism to me, thinking you can get a pass card for poor behaviour and wanting to 1 up

[@HarryThompsonPDAExtraordinaire]

Like we in the Autistic/PDA world haven't heard that one before 🥱

[@amandamcnamara1617]

This.

[@Goaway398]

But do u understand something is wrong with u and it needs to stop so just stop it! Like get a job and Apt and see how life is much harder than ur cartoon brain thinks it was.

[@jestaserialkilla]

PDA dad here raising a PDA daughter. Absolutely love this! It’s strange that I now find myself having to navigate parenting someone like myself, and knowing how bloody irritating my daughter must find me at times, though I try to let her express herself and vent as often as I can. We are so similar it’s uncanny, I just hope that her life path leads her down a less turbulent path than my younger self took!