Siblings and PDA (Pathological Demand Avoidance)- according to a 6 and 9 year old

#PDA #PathologicalDemandAvoidance #autism
What is it like having a sibling when you have Pathological Demand Avoidance (PDA)? And what is it like having a sibling with PDA?
Max invited his little brother to join in on this discussion into what their experiences were in day to day life
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Www.Facebook.com/pdaandus
Here is the link for the book mentioned:
The Red Beast by K.I. Al-ghani
www.amazon.co....

[@lianaeve]

They have such a beautiful relationship so good to see how it's possible to foster such relationships despite the challenges of pda. My nearly 4 year old with pda got lots out of this (he has a nearly 2 year old brother). He asks Max 'what do you do to calm down from a meltdown' and 'why do you feel sad when your angry'. Not sure exactly what he means by this but he has trouble recognising his emotions in a meltdown

[@Comfa]

Hello, and Thankyou so much for the lovely comment. Max has responded to your questions as part of the latest video so please check them out 😀

[@alexlamx]

This is so precious. I see so much of my own boys in this video. Crying so many tears. This is the validation I’ve been needing. Wow. You’ve done a beautiful job as their parents. Thankyou for this.

[@HowdyHeester]

Our 8 year old son was just diagnosed with pda in the USA! A miracle. This video is so touching. The sibling relationship is one of the hardest parts!! You’re doing a great job as parents and your children are precious. Thank you for sharing your journey.

[@Comfa]

Thank you so much for your lovely words. Wow that is awesome, how did you manage to get to a diagnosis? There are so many people in the USA that can get nowhere near a diagnosis so you have done amazing!

[@HowdyHeester]

@@Comfa we joined the pda USA group on Facebook and were able to find a provider near us who is familiar! A blessing for sure!

[@danelnel6970]

Hi, myself an Gideon (11, undiagnosed PDA) would like to thank you guys for your awesome videos. We are quite sure that Gideon has PDA, however here in South Africa it is still a bit of a struggle to get a diagnosis. Please keep on making more videos! Looking forward to hearing more about how Max deals with social situations with friends. Gideon finds it hard to play in a group. It always feels as if the other kids gangs up against him or bullies him.

[@Comfa]

Thankyou so much for your comment, and Max says hello to Gideon! It seems that lots of countries are still new to learning about PDA, we hope that our videos give you some help without more on offer near you. We will have a new video coming soon, when Max feels ready to do it. 😁

[@annabarham155]

I’m autistic and registered blind and I’m afraid of wasps too.

[@cclose8007]

Thank you for sharing x

[@teresab2009]

I wanted to ask if you've looked into grains and oxalate toxicity. It seems to make me have meltdowns. And if you have, does Max respond to them also? Ty. & we know. My grandson is on the spectrum. I'm the one that's certain this is what's effecting us both. His brother isn't on the spectrum, it seems. My younger brother also isn't on the spectrum. They didn't even recognize autism when I was a child. I love the relationship you all have. Max is so lucky to have parents that understand and care. Also I will have meltdowns still. Especially if I feel stuck at drs apts like I can't leave and it makes me appear aggressive when I don't mean to be. Just glad that I've figured it all out. Beside learning behavior skills what else is there to help? I just isolate 98% of the time. I have a drs appt next week so I'm going to bring it all up them. My counseling agency doesn't seem to do the assessment and DX for spectrum disorders. OK I TMI all. the time so I'll end here.

[@Comfa]

Haha don’t worry about TMI, it’s a recognised part of being Neurodiverse. Understanding is the key, and finding ways to help yourself regulate when you have to be in a situation that you find difficult. Maybe look into sensory diets and see if you can work out which of your senses are over or under stimulated, as this will help you find stims and actions to help regulate yourself. Good luck!

[@teresab2009]

@@Comfa oh I've already adjusted my diet. Turn the food pyramid upside down and that's what works great for myself. You were very correct about drs in the states not being familiar with PDA. My doctor has never heard of it until I mentioned it. I really appreciate your videos. They've really helped me so much. My life is literally the opposite of what it's been my entire life. I'd tried to tell my daughter about grains and my neuro reactions to them but you know kids... My grandson she realized is neuro divergent but she hasn't be realized that diet really makes a huge impact if not the most important impact on us But yeah since I wrote that comment so much has changed. I believe I may have Celiac's also and I'm definitely allergic to oxalates. Oxalates I believe everyone should be avoiding especially those of us who have a strong northern European ethnicity. I do great on a 100gr plus of protein. Thank you again for your videos. They've helped me piece my puzzle together. The yt AI was there one to suggest them when I'd been searching for autism and ODD. And tell your son that his effort to educate the world is appreciated! Smart young man to be so brave. He's very lucky to have great parents. I think both my mom and grandma were also neuro divergent too. But again ty.

[@Comfa]

Great that you found such success from adjusting your diet. One of the benefits of being an adult is you’re able to understand the potential benefits of changing things up. Unfortunately that’s not always an easy thing to do, particularly for kids. It’s very frustrating how little knowledge there is out there in 2022 about different Neuro types, it’s a postcode lottery at times. And it’s ever changing, our local health trust didn’t recognise PDA as a separate thing when Max was diagnosed, but a friend only a couple of years later in the same area was diagnosed no issues. We can’t begin to say how much knowing we have helped you out means to us, it’s literally our goal to help as many people as we can. Are you on Facebook? If so please follow the page on there too. We will pass on your comments to Max, I’m sure he’ll be happy to hear it. It’s definitely likely they may have been too as it runs in families in the majority of cases.

[@teresab2009]

@@Comfa yeah I'd known about my grandson being neuro divergent but I never thought in a million years that I was. I'd tried telling drs for years it'd felt like my entire body was being rung like a bell. I hope it does cheer Max up knowing he's helped me. I can't believe it took me until getting 51 yrs old to figure it out either. At least they are trying to dx the different types of divergency. I kind of see it as a super power tbh. I'm so above most when it comes to intelligence and being intuitive it's insane. If I weren't I don't think I'd ever had healed myself tbh. My pic was my neck 13 months ago. You can't see the bone spurs I'd had in it. But yeah I actually see divergency as a super power.

[@Comfa]

When we told him what you’d said he was blown away, and so happy. Frustrating that you had to fight the Drs when you know your own body. We see it as a super power too! The fact Max can list every English king and queen from his interest in history amazes us every day. Wow your neck looks so painful, glad you managed to fix it 😀

[@theautisticpage]

52 year old PDA'r I could be no wiser.

[@Comfa]

What do you mean sorry?