Questions siblings may ask about PDA

Growing up in a home with a PDAer can have some challenges. Both younger and older children are likely to have questions about PDA and their sibling’s needs. This page may help you to answer some of the more common questions being asked.

Pathological Demand Avoidance (PDA) is a profile of autism. This means your sibling experiences the world differently to people who do not have PDA. They may find everyday activities feel overwhelming. To help them cope with this they need to feel in control as much as possible. Avoiding demands is how they automatically try to lower their anxiety.

Some autistic people find it tricky to socialise with others and communicate easily. They might struggle to understand their own feelings or how other people respond to them.

Your sibling might also have a special interest in something which makes them feel happy and excited. They may want to talk about this and share what they know with you.

You might notice that your sibling has sensory differences and notices smells and sounds when you do not.

There may be other behaviours you notice in your sibling which are part of their PDA profile. Some PDAers also have other conditions too. If you would like to understand more about your sibling’s needs, you can ask your family about any other diagnoses your sibling may have.

Autism is often described as a “hidden disability” because it doesn’t change how someone looks. Many PDAers are good at hiding their struggles, especially at school or in public.  This is called ‘masking’.  They are more likely to show their anxieties more at home, where they feel safest.

For many PDAers anxiety can be building up without them realising. Then something will just tip the balance, and they react. This might look like a quick change in mood but could have been building up. This isn’t something they can control, it’s just how their brain reacts to stress.

It can be useful to think of a PDAers’ anxiety like a bottle of fizzy drink. The bottle rolls around in your bag during the day and shakes up and down as you run home. You throw your bag down on the floor and get the bottle out to open it. The drink whooshes out all over the place. You didn’t realise that the bubbles had been building up all day and the final drop caused it to spill out.

When a PDAer’s anxiety gets too high, they may have a panic attack or meltdown. This can look different for each person. Some might shout, cry, break things, or lash out. Others might go completely quiet, hide, or even fall asleep.

Meltdowns aren’t tantrums. They aren’t a choice, and your sibling may not remember what happened afterward. It’s not their fault or yours, it’s just how their brain responds to extreme stress.

PDAers often focus intensely on people rather than objects or interests. Your sibling may want to spend all their time with you and decide what you do together. This can feel overwhelming.  It’s okay to ask your parent/carer for help to get some time and space for yourself.

• Be calm: trying not to get too excited or loud when you are with your sibling can help them feel less anxious.
  
• Soft words: words like “no,” “stop,” “must,” or “now,” can feel like demands to a PDAer. Practice using some softer ones in their place like “maybe”, “later” and “perhaps”. It’s always ok to use “no” or “stop” when it’s really important that your sibling pays attention and stops what they are doing.
  
• Giving choices: instead of saying, “Stop taking my things,” try, “Would you like to play with this instead?”
• Fun and games: silly jokes, making a game out of things, or using a funny voice can sometimes help PDAers get through tricky moments.
• Asking them: if you want to help but don’t know how, just try asking. If your sibling is old enough you could ask them directly how you can help them. If they are younger, then you can talk to your parents/carers about what they think might be best for your sibling.
• Being yourself: you have a unique relationship with your sibling. Just being there for them and having fun together can help them feel supported and loved.

You might not always get it right, and that’s okay. The more you learn about your sibling, the more you’ll understand what helps.

Sometimes, your sibling may seem to “get away” with things that you can’t. This isn’t because your parents/carers are being unfair. Your parents/carers need to carefully choose what demands are placed on your PDA sibling to try and keep their anxiety levels down. For example, if your sibling refuses to go to bed, your parents might give them some extra time to get used to the idea. By going at their own pace, they may get to bed later but avoid having a meltdown. It doesn’t mean the rules don’t apply, just that they might need to be handled differently.

Yes! It’s completely normal to feel frustrated, upset, or even angry at times. You might feel like your sibling gets more attention or that things aren’t fair. You might also feel protective of them or guilty when things are difficult. All these feelings are valid.

The most important thing is to talk to someone you trust. This might be your parents, another family member, a teacher, or a support group. You don’t have to deal with your feelings alone.

Here are some places that offer support for siblings:

• YoungSibs
• Sibling Support Project
• Sibs UK
• YoungMinds
• Carers Trust
• Childline

If your sibling is old enough you should check with them first.  Ask if they consent to having you share information about them. If they agree then you might find it helpful to talk to trusted friends about your homelife. If you’re unsure what to do, talking to your parents might help you decide what feels right.

Your parents are the best people to ask about your sibling’s needs. If you have questions, don’t be afraid to talk to them, they want to help. Learning more about PDA can make things easier for you and your family.

If you’re looking for ideas that actually help, our parent carer training could be for you. It’s built by people with lived experience, and is full of practical tips. Parents tell us that after our training they better understand what is going on for their family, why they are struggling and what they can do to help.