"What If We Stopped Asking 'What's Wrong With This Child?' and Started Asking 'What's Happened Here?'"

As a parent of autistic/PDA children, I have heard my fair share of opinions from others about my children's behaviours and presentation over the past few years.

Alongside raising three neurodivergent children, I have spent the last eleven years working alongside children and families. I've heard these misconceptions from every angle—around dinner tables, in schools, in professional meetings and even directed at my own family.

The Children Behind The Behaviour

My eldest daughter, A, was 13 years old when she was diagnosed with Autism.  She had always been literal thinking, for example; my best friend remembers when A was talking about our Halloween decorations at home. She went into detail about how many fake spiders were on the fireplace and their positioning.  She would also respond to comments such as, "somebody got out on the wrong side of bed today" with "well that's impossible, my bed is against a wall I can only get out one way."

So, what was A described as by some people (including some family members)? 

Rude. 

A has and still is an introvert. She enjoys her own company, she likes to read and write which she spends her time doing at her desk in her bedroom. If we have guests over, she will pop down to say "hello" but often will retreat to her bedroom. This has been difficult for some family members who have commented that she is "a typical teenager" or "rude". But the truth is she is neither.

A is aware of her own limits, she knows when she is overwhelmed and when she can engage in conversation with others. Instead of placing herself in a situation where she feels uncomfortable, leading to dysregulation, she removes herself to ensure that she is within her own comfort zone. 

When Well-Meaning Advice isn't Helpful

When S was born, she needed comfort from me or her father constantly. She would not be put down to sleep to the point that her father and I shared nights 50/50, holding S so she could sleep then swapping after her feed.

S was also born in lockdown which I feel contributed to her social and emotional development. She was not introduced to her Grandparents for 3 months, and the only people she saw were me, her father and A. It was hardly surprising when restrictions started lifting that she couldn't manage being held by anyone else. 

This was a challenging time for us as a family. Our closest friends and family members were eager to come and meet her, give her a cuddle, have that "newborn" sleeping on them. But S was unable to go to anyone other than us. 

The assumptions that were made at that time were hard to hear, regarding S's emotional attachment and her sleep patterns. 

"If you don't let her  go to other people, she will become completely reliant on you."

This one got me. Aren't children supposed to be reliant on their parents? At least until a certain age. 

"Just put her in her cot and leave her to cry it out – that never harmed any of mine when they were little."

It didn't feel natural to leave my distressed child in her cot to cry herself to sleep.

At that time, I didn't know much about Attachment theories. When I went back to work after my maternity leave, I completed a 3-day workshop on "Attachment-based practice". During this workshop I learnt how those early stages of development were crucial to a child's emotional wellbeing and attachment. 

British psychiatrist and psychoanalyst John Bowlby proposed that behaviours such as crying, clinging and seeking closeness to a caregiver are instinctive survival responses. He believed these early attachment relationships help children feel safe and provide the emotional security needed for healthy development.

Learn more about Bowlby's attachment theory here: [The Voice of Early Childhood – An Introduction to John Bowlby]

I won't go into Attachment here as this is a completely different topic and deserves more than a mention. But we will acknowledge how important it is to childhood and adolescents. 

As S grew older, her behaviours developed and I started thinking that her presentations were not of a "typical toddler".  She seemed to go through the "terrible 2's" from 11 months old. Just before every transition, whether that be from changing out of night clothes to daytime clothes, getting in or out of the bath, or going somewhere from home. I noticed that she appeared to dysregulate very quickly. 

S would throw herself on the floor and it genuinely did look like a "tantrum". I felt myself wondering why she was having such a response to getting changed.  Even changing her nappy was incredibly difficult – she would refuse a nappy change and want to stay in soiled or wet nappies. 

I didn't know then, but these were the first signs of Pathological Demand Avoidance. 

The opinions from others when I described S's behaviours;

"Just sit on her and change her that way, that's what we had to do." 

"Tell her if she doesn't get changed, she will lose her favourite toy."

"Stick her on the naughty step."

Of course, none of these were going to help S or myself. 

S was never keen to go to her childminder from 11 months, in fact when I fell pregnant with my youngest daughter, R, I made the decision to take S out of childcare and have her at home with me throughout my maternity. 

She went to nursery the September after she was 3 to get her ready for school. She absolutely hated nursery and would scream and cry, often refusing, every morning. 

"That's because you didn't let anyone hold her when she was a baby." 

I felt blamed and criticised for a situation that was nothing to do with me. I did not choose lockdown, I did not set restrictions, but I could feel judgement from friends and family about S's attachment and the way she avoids social interactions entirely. 

Choice or capacity?

S started school, and as expected within a few weeks she was refusing or declaring her dislike for school every day. It became a battle to get her in at times. 

I received comments from others like:

"She's just being naughty, stick her in the car and drop her off. Don't give her the choice."

Which led me to wonder, what is the difference between "choice" and "capacity"?

S may deep down want to go to school. She does not like to be seen as "different", she likes her closest friends and she enjoys learning. But her capacity to manage the expectations of school were minimal. 

To someone on the outside, S was being defiant by refusing to attend school. "If you let her get away with it, she will keep doing it." 

My response to those comments now is; "would you tell someone who is afraid of snakes to jump into a snake pit?" 

What if avoidance was actually fear?

School picked up on S's emotional wellbeing and referred her to the Child Development Clinic with recommendations for an autism assessment. 

Now, I had my own ideas about S and having autism from an early on age.  She was incredibly advanced, by 18 months she could recite the whole alphabet song, and she was talking in flowing sentences.  I remember the Health Visitor coming to do S’s 27 month check. S was in the front room writing letters on her whiteboard – she was chatting away like she always did. The health visitor asked, “where is S?” and I pointed to her, she replied “oh wow, her speech is incredible.

When S turned 5 her meltdowns became physical, mainly directed at me or her father. She would get herself into a massive state of dysregulation, and anything she had in front of her would be launched at me.  If she did not have anything to hand, she would run at me and dig her nails into my arm or scratch me. 

"I just cannot imagine S reacting to anything in that way, she is always so well behaved."

Masking

Masking is when a neurodivergent person consciously or unconsciously hides or changes aspects of themselves in order to appear more neurotypical or to fit into social situations. While it can help someone avoid unwanted attention or judgement, it often comes at a significant emotional cost.

This description is informed by the work of Inclusion Hub.

This is often why professionals and extended family say, "But they're always fine when I see them."

S was and still is fantastic at masking. In fact, I'd go as far as saying when she is around people who she does not know well, or in a social setting or event, she is a completely different child. 

At home she feels safe, she feels able to express herself and she knows that there is not a risk to her whilst she does this. She does not need to adapt her character to "fit in" with anyone, she knows where she can go to regulate and she can use her comforter without unwanted attention.

Now S is 6 years old; the meltdowns continue, the dysregulation continues, the anxiety continues and the emotional based school avoidance continues. 

So, what has changed? 

The way that I perceive her behaviour.

Being able to respectfully decline other people's suggestions when I know that they would be detrimental to her mental and emotional health.

Knowing her triggers, knowing the signs of meltdown and attempting regulation before she peaks.

Understanding how situations affect her and not trying to encourage her to attend certain events knowing that she will not manage. 

Giving her time to regulate when she needs to. 

Acknowledging that behaviour is communication.

Behaviour is Communication 

I had to step back and ask myself,

"What is this behaviour communicating?"

"What if this behaviour is not a choice?"

And 9 times out of 10 I could retrace the steps leading up to the meltdown and identify the cause. 

I often go through the 5 general human needs in my head:

"Has she eaten, is she hungry?"

"Has she drunk enough, is she thirsty?"

"Does she need the toilet?"

"Is she tired?"

"Is she warm? Cold?" 

If none of these arrive at an answer, I look deeper into what may be happening emotionally and mentally. 

"Has she got anxiety about an upcoming event?"

"Has she got upset in a social situation?"

"Has her sister tried to play with her toys without her saying she can?"

"Has she seen something that has scared or worried her?"

"Has there been a lot going on, so she is overwhelmed and over stimulated?"

"Does she feel that she is losing autonomy?"

Let me give you an example where I have had to retrace steps to identify the cause of a meltdown or massive episode of dysregulation. 

It's a Wednesday, we are about to get ready for school. S has got up in her own time, she has sorted her clothes out for the day, brushed her teeth, washed her face, brushed her hair and had breakfast. Everything is going smoothly. Her emotions seem stable; she seems to be in good spirits, and she is being kind to everyone at home. 

I tell S that she has a birthday party on Saturday, a friend from school. She asks me questions about the party which I answer. "Where is it? What are we doing? Who is going?"

This birthday party was a picnic in our local park, the Mum of the birthday boy said there would be some games to play and just a general hang/chill out. 

S did not say anything about this, I could see in her head she was processing the information and deciding what that might look like. 

After half an hour, it was time for us to leave for school. S appeared to be getting ready, when I suddenly heard something being thrown across the hallway and her initial sound of dysregulation. (This presents as a "hmph!") 

I asked whether she was OK. She had thrown her shoes across the hallway and was ripping her socks off. She was calling them "stupid" socks, saying they are annoying her. 

The socks had been on for over an hour and a half, so I was mindful that this was probably not the socks' fault. 

S did not want help, she did not want an alternative option – she wanted to throw her socks across the hallway to follow her shoes, and then anything else that was in her vicinity.

At this point, I didn't push as I knew that would lead to her becoming more dysregulated. I let her know that I would be in the kitchen if she needed me for anything. 

S went to the sofa and wrapped herself in her blanket, she took her comforter and turned the TV back on. 

I left her for 10-15 minutes, we were already late for school at that point, and I didn't want to present her with any overwhelming demands. I went into the room and asked her if she'd like me to sit in with her, "no, I don't want to go to school." This was said in a firm but level voice, however escalated into her screaming "I don't want to go to school! School's boring!!" 

I knew at this point it was likely that she would not go to school. Her anxiety had increased, she was dysregulated and she was going to escalate if I did not remove the demand. 

I told her, "It's OK, we don't have to talk about school right now." Not saying directly, "you don't have to go", but just reassuring her that school wasn't in the conversation right now. 

I left S to attempt regulation. She did not go to school that day, we stayed at home and did some "home learning" (which included quick downloads off Twinkl and a "what can we find" hunt in the garden.")

As soon as the demand of school was removed, S immediately began regulating, her tone towards me changed and you could see the pressure lift off her shoulders. 

It wasn't until much later in the day, in fact it was evening after dinner, that S said to me, "I don't want to go and have a picnic with "friend", I don't like picnics and I don't like games." 

We spoke about this for a little while so I could better understand her anxieties.  She does not enjoy sports day as she does not like others looking at her, so in her mind hearing the word "games" meant that they would be teamed up and everyone would look at her.  Just like sitting in a large group eating a picnic, it would mean she'd be sitting with parents of other children she did not know and that caused her great anxiety. 

I reassured S that we did not have to go to the picnic party if she did not want to, and maybe she could take a present in for her friend on the Friday. S agreed that this was what she wanted to do. 

So, it wasn't socks, it wasn't the shoes, it wasn't because school is boring. It was because I told her about an upcoming event that caused her anxiety, which meant that her mind went into overdrive anticipating what that event might look like. 

The Behaviour was Communicating:

"I am worried about this, I don't like being looked at in games, I am anxious about eating in front of people I don't know, and I am not sure who will be going and whether they will play with me."

Boundaries Still Matter - but they may Look Different

"She just needs boundaries!"

I hear this one alot, and honestly it rattles me. 

What I have learnt both professionally and through raising 3 neurodivergent children, as well as being neurodiverse myself, is "generalised boundaries do not work."

I cannot tell S, "If you don't do as you are told you will lose your iPad for a week." That iPad is part of her regulation; she uses the iPad in moments where she is feeling overwhelmed and distressed. If I removed it from her, it would be like removing an old age pensioners lifeline. I would be removing the connection to her feeling safe and grounded. 

When boundaries become rigid demands, the demand avoidance becomes greater. It could be an expectation that S sits at the dinner table to eat, or that she gets out of her school clothes and puts them in the wash when she gets home. Adding an additional demand to her day could cause her nervous system to shut down, and in doing that she would launch into fight/flight/freeze or fawn. 

Instead, in our household we offer choices, and I have removed the expectations that I had as a mother to have dinner with the family at a table every night. 

"Do you want to eat your dinner at the dining table, or would you like to eat in the front room?" 

No expectation, no pressure and we let her decide. 

This allows S to feel she has a sense of autonomy; she is being able to choose what she wants and what she feels safest doing. 

Don't get me wrong, boundaries are important to ensure that we protect ourselves and our children. But how we implement them often needs to change. 

For example, if S has a moment of dysregulation and hurts her sister, I will remove her sister from the room and leave S in there as opposed to removing her. That way I can comfort her sister, giving S the time she needs to regulate and be able to regulate myself before attempting co-regulation.

Final thoughts

Understanding the behaviours does not mean removing every expectation. 

It means making sure our expectations are realistic, compassionate and meet our children where they are. 

When we understand what's beneath the behaviour, we stop working against our children and start working alongside them. 

Perhaps the biggest lesson neurodivergent children have taught me is this:

Behaviour is rarely random.

Behind every meltdown, refusal, shutdown or outburst is a story.

When we stop asking, 

"How do I stop this behaviour?"

and instead ask,

"What is this behaviour trying to tell me?"

everything begins to change.

Not overnight.

Not perfectly.

But compassion replaces judgement, curiosity replaces frustration, and little by little, connection replaces conflict.

With love,

Becky x

References

• Bowlby, J. (Attachment Theory). Read more: The Voice of Early Childhood – An Introduction to John Bowlby.

• Inclusion Hub. What is Neurodivergent Masking? Why Do Professionals Do It?