Autistic people frequently suffer from ongoing stresses, like being misunderstood, feeling unheard, experiencing RSD, having schema disrupted, etc. Most neurodivergent people experience many of these, even if allistic, due to the pressure placed upon them by neuronormative societal expectations. While this can result in meltdowns, or challenging behaviour, another demonstration of this can be straightforward distress.
What is Distress?
Distress is extreme sadness, anxiety, or pain, and can present in a number of ways.
“Distressed behaviours arise when our life experiences (sensory, emotional, social, demands etc.) exceed our capacity to cope and we feel overwhelmed and lose control.”
PDA Society UK
Distress can show as a meltdown, self-harm, lashing out at others, shutdown, taking flight, or other standard responses. It frequently shows as uncontrollable crying, with traits such as loss of skills (organised speech, ability to speak, eye contact, etc), retreating to foetal position, stimming, or seeking physical comfort.
Rumbling or Stumbling?
This not-quite-a-meltdown is sometimes seen to be a precursor to a meltdown, if the stress input continues. In that situation it is known as the “Rumbling Phase”. Providing support and coregulation, and removing stress, can help prevent distress turning into a meltdown.
However distress can also be a means of expressing severe discomfort – mental, physical or emotional – when other methods have failed. If this is the case, it is often best met in other ways.
How to Approach
If your child (or another neurodivergent person you care about) in distress, assisting them using the usual approaches for emotional dysregulation can help. However, emotional distress is often linked to feeling unheard or unable to communicate to get the sufficient specific support required. In that case, the following steps can help them release some of the panic and find regulation again:
- Acknowledge that they seem distressed. Assure them that you are there to help because you love them and you want them to feel safe, heard, and happy.
- Validate their current distressed experience as something that is severely uncomfortable, uncontrollable, and potentially scary and feeling impossible to resolve.
- Avoid toxic positivity. Try “I’m going to stick with you as long as you need me to, and we can fix this together,” rather than, “You’re okay. It’s going to be fine. You don’t need to be upset.”
- Validate what you know of the trigger. Even if it’s a broad, “You are upset because it’s raining heavily, and you were meant to be gardening today.” If you don’t know what has upset them, or don’t know why it has upset them to the degree it has, it is important to be curious and figure this out before you validate. But before you do this…
- Pep talk before pressure! Before you place any demands upon the distressed person give them your best pep talk first. Even if your demands are kind ones like, “Are you able to tell me why getting the gardening done this morning was so important to you?”, don’t do it! Tell them they’re brave, wonderful, and resilient. Telling them they’re loved can never happen often enough. Let them know you’re proud of them for communicating that they’re upset, so you know they need support. Say you know the two of you can solve this, and you don’t mind how long it takes. Avoid any pseudo-negatives such as, “I forgive you for shouting at me,” or “I appreciate that you didn’t hit me this time,” or “You did a great job not going into a full meltdown”.
- And then the gentle pressure. Avoid placing demands or expectations on an already-overwhelmed person. “What do you need right now?” is a kind, generous, and thoughtful question. But to a distressed person – especially if they have a PDA profile – it can be yet another burden. Try “Do you know why this has upset you so much?” or “I’d love to help you, and I think maybe a cold drink might help. Is that okay with you?”
- Validate again, with all the information you now have at hand. Check they feel heard, and that you understand. Give them any reasonable support they’ve accepted or requested. Coregulate.
Cotton Wool
In many cases, the concept of “wrapping someone in cotton wool” is seen in a negative light. It’s associated with pandering, helicopter patenting, overprotecting, mollycoddling, and being patronising.
However, done with love and consent, care can be a fantastic way to bridge the gap between distress and regulation. Combined with the intention of enabling independence and autonomy again, you’re on to a winner.
Offering a hand to help them up, giving cuddles, carrying children small enough to be carried, curling them up in bed or on the sofa, snuggling, stroking hair – depending on your child’s sensory needs and preferences – allow your child’s brain to release “happy hormones” to counter the ones making them feel awful, such as cortisol and adrenalin.
Much like Helping Your Child With Tasks, assisting your child to regulate, and rediscover the feeling of comfort and safety, does not mean they will rely on you for this forever. You are exposing them to a positive pathway. You’re demonstrating how to walk this path. Showing them how to find the path. And – most importantly – reminding them that this path exists; it won’t feel bad forever, even though when you’re distressed it feels like it will.
After the Storm
Don’t tiptoe around your child like they’re fragile and at risk of becoming distressed again. But do be aware of reinstating unnecessary stresses. Also don’t tiptoe around the fact they were distressed. It’s important that they know their tricky feelings and behaviours are valid and acknowledged as much as the good ones. Offering them a snack, or asking if they want to come and walk the dog with you, is not “rewarding bad behaviour”. It is not encouraging them to become distressed another time in order to receive the kindness afterwards! It is providing them with comfort, reassurance, and love, which are all crucial in distress prevention.
When your child has been distressed, chances are it was for a reason. It might not be a reason that resonates with you, but it clearly means – or meant – a lot to them.
Once your child is regulated again, consider raising the issue with them. See if there’s a bigger issue at play here. Perhaps they were upset that the rain had preventing their gardening, because they felt it was the only nice thing they had planned that week and now it felt like the entire week was going to be made of difficult things. Maybe they have a friend coming over soon, and they wanted to spend time outside, and wanted the garden to look nice for them. Perhaps they were feeling dysregulated, and were employing their own wonderful skills to regulate, and had recognised that gardening was going to be the best way to do that… and now they can’t. Wouldn’t that feel scary?
What About Your Feelings?
Sometimes when people are distressed, they lash out, or at least reduce the niceties. They might express something like, “No-one cares how I feel!” If you’ve spent the morning ensuring they have their favourite bowl and cup for breakfast, that they have the socks that feel comfortable, only putting the things in their lunchbox that you know they feel safe eating, and have supported them through various meltdowns already this week, a statement like that can really hurt. It can be triggering, and make you feel equally unseen and unheard!
Expressing this to a distressed person in the form of defence or correction will only escalate the situation. No good will come – for you or for them – from saying, “I show how much I care all the time!” Even if it is true. Even if it’s being said to try to help them shake that negative perception. It simply won’t have that effect.
Try:
- Park your feelings. This doesn’t mean repress them, invalidate them, or tell yourself they don’t matter. They matter. They really, really matter. But a distressed child is not going to give you the validation, apology, comfort, or regulation that you need right now, so reaching for this will only hurt you both. Raise these feelings later with someone you trust and have your experience validated that way.
- Validating their feelings. This doesn’t mean agreeing with them or reinforcing them. A short, “You feel like no-one cares how you feel,” allows them to feel heard.
- Give them goodness. “I care so much about how you feel, and I’m sorry that’s not connecting with you at the moment.”
- Avoid proving your point, “I care about how you feel. I make you your favourite foods, I look after you, I’m helping you right now. See how much I care?” (Later, when your child is regulated, you could say something like, “I really care about your feelings, and I want you to know and feel that. I feel like I’m doing a lot that says that, but it obviously isn’t connecting in the way I intend it to. What would caring about your feelings look like for you?”)
- After the distress has passed, talk to your child about whatever hurt your feelings, but ideally leave that specific incident out of the discussion. In this case, it might be something like, “Sometimes when we’re really sad or angry we use what’s called hyperbole. Do you know what that is?” And then explain how hyperbolising can hurt people’s feelings. Ask your child if anyone has ever said they “always” something or “never” something, when it simply isn’t the case, and if that annoyed them. Teach them how to not hurt other people’s feelings, rather than complaining that they have.
Big Picture Assistance
If taught and conducted well, DBT (Dialectical Behaviour Therapy) can have a major impact on a person’s level of “distress tolerance”. This is not the best phrase, in my opinion, because it isn’t about tolerating feelings of distress at all. It is about recognising the early bubblings of rubbish feelings, and applying strategies to prevent them turning into distress.
As an AuDHDer, DBT methods such as elements of TIPP Skills, Distraction, and Acceptance, have reduced my ongoing feelings of “coping” significantly, and allowed me frequently to handle even genuine trauma and problems without resorting to risky behaviours.
Talk to your child’s psychologist or GP to see if there is a neuroaffirming DBT practitioner appropriate for your child’s age group and skill set.