Resources

Hearing about the lived PDA experience is, in the words of many professionals, “like gold dust”.

Whilst we’re increasingly hearing the adult PDA voice, this Q&A is with a teenager Sage (not her real name) who volunteered to answer questions posed by the online PDA community and asked on our behalf by Nicole from Bumblebee Yoga.

Sage wants to “help people understand that there’s light at the end of the tunnel and that PDA can be managed when it’s understood properly.” She lives in the South of England and is keen to explore interest-based learning at home. One of her hobbies is “sharing my own misfortunes in a funny way to distract others from their own”. Sage is beginning to document her experiences on Instagram in the hope that she can offer support to other teenagers with PDA and their families.

Sage’s Mum also answers a couple of questions too …

How do I help my child to understand that outside the home people are not skilled enough to ask them to do tasks in the right way? Bosses are going to just ask/tell you. How do I prepare them for that?

Sage: Self-employment might be the way to go! If she’s at school that will be giving her insights into how people are; you can explain it’s similar to work. I think also it comes with age – you just realise it more as you get older.

How could I encourage my child to get washed or change clothes? … After a year of refusal?

Sage: Go with it and stop asking. Sometimes reverse psychology works. When they want to shower, they will…but just stop asking!

How can I help my child understand how important exams are for their future?

Sage: Think outside the box! Not everyone has to do exams in the same way as everyone else to succeed in life. You don’t have to do exams.

How do you stop lashing out?

Sage: I have different ways of expressing my anger – music mostly. I go to a gig and stand in the mosh pit and scream to the music! I still want to lash out but I can control it more now. It’s about finding the right way. Physical things are good like karate, running or exercise.

What do you wish I understood better?

Sage: That PDA is so much more than just a block or a wall between you and being able to do something. Sometimes it’s like you become possessed in that moment and your eyes glaze over and you don’t see your parents as themselves anymore…but then 5 minutes later it’s all ok again.

How to explain what PDA is for our daughter to understand herself better and also her siblings – in a very simple short explanation?

(This question was tricky to answer but the conversation it sparked went like this…)

Sage: I don’t remember someone explaining it to me… Mum might be better at answering this question.

Sage’s Mum: I learnt a lot through the internet….it was so new back then and there was no social media. I read the book, ‘PDA Syndrome – My Daughter is Not Naughty’ by Jane Sherwin and that really helped. It was just the beginning though, then we had to make all the changes. We were really just trying to understand what it was.

Sage: It was weird because other people could say ‘no’ to me but you couldn’t.

Sage’s Mum: I think that was because it was a build up from me and it was about control for you.

Sage: Yeah, then I built up or found control by you saying yes to everything and if you said no, I would do it myself anyway.

Sage’s Mum: It’s taken me a long time to be able to say no to you.

Sage: So to answer the question, I guess it takes time and a lot of patience… and memes! Memes are always good for explaining things.

If we offer food/lunch etc and you say you don’t want anything, do we keep asking every now and again or just leave it to you to say you’re hungry?

Sage: If the child has the capacity to reach inside a cupboard and get a snack, let them. If your child doesn’t have issues around eating then just allow them to eat when they’re hungry. If I’m indulging in the Sims, I can sometimes go a whole week without eating food, it’s a massive distraction away from food. It’s important your child is healthy – equal amounts of veg and sugar but don’t go on at them if they want two ice creams in one day.

It’s very important to avoid conversations around diet… don’t encourage certain eating habits.

People with autism are hyper-aware, so they’re not going to react like a NT person (but this does depend on the child) when given a bit of information. They can hear some things and they feel like they have to change their life for it.

Also, when people constantly ask me if I want food, I don’t see it as a demand, I see it as patronising, I get annoyed. It doesn’t make my PDA sky rocket, it just makes me mad… I also won’t eat food if someone asks me to eat!! I’m not going to eat food in front of you, you numpty!!

Do you sometimes say no to something, when you do actually want it….?

Sage: Yes, I do that all the time! It’s just me being socially awkward and socially anxious when I say no I don’t want something, but actually I do. Like if someone offers me a drink, I say no I’m fine thank you, but in reality I haven’t drunk in 82 daaaays!! It’s just me socially conforming to say no but I’m too anxious to then say, actually I would like one.

How did you get on at school re admittance/support/exams etc? Do you feel that getting a job in what you want to do seems like an achievable goal?

Sage’s Mum: School didn’t really know [about PDA] back then so it was best to take her out of school so we could implement the PDA strategies.

Sage: My dream job is to be a lawyer but I don’t think I’ll pass the bar exam so no, I don’t think it’s achievable. I don’t like sitting exams, well I’ve only taken one, a horse-riding exam, but it annoyed me because they tested me on things they hadn’t told me were going to be in the exam. I learnt the important stuff, things I thought would be important to know but they didn’t ask about that. I learnt the safety rules and what to do if someone falls off, gets hurt etc. but instead they asked what types of grooming brushes there are!

I think, from what you say, that you’re super focused and determined. I reckon if you put your mind to something, you could definitely do it.

Sage: I do think that if I put my mind to something, I can do anything, but in doing that, it completely takes over my life. Now I want to become a salesman and sell horses and I know I can do that easily; I could do that tomorrow if I wanted to!

My son (13) desperately wants friends but the two he had have long gone. He wants friends but won’t go out to achieve this… Did you have friendship issues, do you have any now?

Sage: I have made some really awesome friends online but I have met hardly any friends in real life! Online friends are so valuable and more permanent because they can be there for you anytime. You don’t have to wait to meet up with them to chat. Real life friendships with people who are at school make me feel that I’m always on the side-lines because they can’t message during the day or the middle of the night! I would say try social media, try Amino or Reach – it’s how I met my best friends. I just messaged my friend and said, your profile looks cool, want to be friends? She said yes!

It’s important to inform your child about the dangers of people online so they know and understand, and then after that, sign them up. I mean, it is more isolating in a way and it does make it harder to make real friends in person but it’s better than not having any. Also try groups and clubs as much as possible, so you’re prepared for when you go to college etc. Group chats are also great, you can be part of a real community. You might not know people in the group at first, but you get to know them.