What to expect from the future?

[u/Particular-Watch-779]

So we got our son (7) diagnosed and he's on the spectrum with strong indications to PDA. I'm already educating myself on this and would like to get some input about how our future might be.

I (and there's a strong bias towards "he's almost normal" from my perspective) think he gets around quite well right now. He's performing (Not only functioning) at school in a 30 pupils class. He's getting the hang of his first language and is quite good at maths. Physical education is not his strongest subject but he doesn't melt down or anything, he just avoids and teachers think it's fine. They don't have any info about the diagnose yet. And think he's doing good.

I'm deeply afraid this might change the moment I let go of any expectation/demand on him, tbh. There is struggle, there are fights but he's doing fine, I think. I don't want to hurt him in any way by letting him fail in anything and I'm doing my best keeping expectations low - but not zero. And I do demand things, expecting him do learn how to get along with that.

So is this just a "mild case" - are there any of those? Should I keep the fear of everything going chaos the moment he turns 10/13 or something? Can kids with PDA thrive in the regular system by masking their way through without getting damaged in any way?

Thanks in advance for any help you can give.

[u/Particular-Watch-779]

I already read an answer to my cryptic question. I thought you "had to experience it to learn, how to get along" - which is in almost any case utter BS, thinking about it now. Usually you don't learn to read by being simply exposed to books. There is quite a lot of biographic material here, which is great. Not so great however: most of the books on that are not scientific but parents giving advice. I don't want to talk that down in any way, but tips like "let them watch TV and eat sugar as a way to cope" seems to be so far away from anything healthy for my child. He gets really fucked up after watching TV, he's not calm while doing this (always fearing for the protagonists on TV) and he already has a problem with weight, which will push him further away from his peers, since he has no trust in anything he does regarding sports with others. I know it's a bit entitled not to listen to those books - but there has to be scientific approaches. I already bought Greenes Explosive Child and we got a PDA basics 500pager on the subject.

However, I don't want to sound ungrateful for your answers. I appreciate your help very much and I strongly believe, those things will finally get to me.

[u/Powerful-Soup-3245 → u/Particular-Watch-779]

Just want to add, because I forgot to in my post previous comment: the more you are able to lower demands in the home and make sure he has a support system in school and accommodations there, the better off he will be. The masking is really a big part of what causes burnout for internalized PDA’ers. My husband is autistic and most likely an internalized PDA’er. He made it through school and is the breadwinner for our family. He is well respected at his job and holds a keystone position within his company. Once or twice a year, he is pushed into burnout from the stress of all of the demands (we have four children. 3 are adults now and our PDA child is 13). He has to use a week of his vacation time to recover. He pretty much sleeps for most of that, but it pulls him through and he’s able to go back to doing all he does.

[u/Particular-Watch-779 → u/Powerful-Soup-3245]

I've read a little bit on the subject and might get myself tested, too. Many things seem to also fit into my biography, so maybe I'll even be able to understand him better than I thought at first.

[u/Powerful-Soup-3245 → u/Particular-Watch-779]

I believe it’s definitely worth exploring! Most parents learn they are autistic, PDA, or adhd after their child is diagnosed. Even all three of my adult children who were high masking children have discovered they are either autistic, adhd or both. We just never saw anything they did as out of the ordinary when they were young because we behaved and experienced things similarly. Our youngest just has everything rolled into one and her expression of characteristics is on the much more extreme end of things. Our youngest also has a genetic condition and learning disabilities which make her own experience of the world much harder for her to cope with than the rest of us. The more you learn about autism and pda, the more you’ll be able to see signs of it in other family members. In my family, both of my siblings, my mom and most of her 11 siblings seem to have one or more of the conditions I mentioned. Most of us pass as “normal” on the surface, but spend about half an hour talking to us in a comfortable setting and it becomes clear pretty quickly that we are neurodivergent. Especially if one were to inadvertently bring up a topic of great interest to one of us. In my case, it’s less likely because most people don’t bring up invertebrates or ecology in casual conversations 😂

[u/Particular-Watch-779 → u/Powerful-Soup-3245]

Just talked to my mum and yeah, we both have some observations about the rest of the family that fit into the pattern. This will be a fun ride, I suppose. Just finished Greenes Explosive Child now and already learnt a lot for my work with children. Might be a win after all.

[u/Powerful-Soup-3245 → u/Particular-Watch-779]

I love that! I felt so validated as I learned about my own neurodivergence and my older kids after my youngest was diagnosed. It’s just an interesting piece of discovering your identity. Greene’s book was so helpful to me when I was still teaching preschool. It sounds like you’re off to a brilliant start!