If you can’t imagine it, can it still be real?

Jan 3

Some people are unintentionally dismissing autistic people’s experiences because they’re not as great at empathy as they thought. Could this be you?

You're either “one of us” or “not one of us”.

This is how many parents of neurodivergent kids categorise the people who are involved in their children’s care like teachers, Sencos, and local authority decision makers.

“One of us” refers to someone who gets it or is at least willing to accept our child’s challenges at face value. To give them the benefit of the doubt even when it’s hard to imagine.

“Not one of us” refers to the other people, many of whom think they get it, they might even say they get it, but in reality they just can’t accept the level of impact autism has on a child, on their ability to make friends, access their learning and carry out general every day tasks. They think they’re exaggerating things or in some way overreacting.

Here are some typical examples of what the “not ones of us” say all the time that inadvertently invalidates an autistic child’s experience:

“I can see you're upset, but it will all blow over”
“It’s no big deal, just calm down and read out the answer?”
“Stop overreacting!”
“You’re reading too much into this”

Sadly, the world has many “not ones of us” in it and when a “not one of us” is responsible for a neurodivergent child’s care, it can lead to an irreparable breakdown of trust and preventable trauma. And that deeply upsets us parents, because the most important job we have in the world is to keep our children safe and happy.

I have to admit, I’ve been totally obsessing over this conundrum since visiting the National Network of Parents and Carers Forums conference earlier this week. I think I’ve finally figured it out, but so many people still haven’t.

What can I do to help the “not ones of us” become “ones of us”? How can I shift their mindsets? Is that even a realistic expectation? And if it’s not realistic, what hope do our children have of reaching their full potential in life?

So here it is, I’m going to do my best to change minds with this powerful comparison! Comparing two similar scenarios in a classroom, where teachers might respond differently, and I’d like you to try and work out why they might be.

Scenario 1

Neurodivergent children can find classrooms unwelcoming spaces. The sounds, scents and behaviours of the people around them can cause significant sensory distress. Add to this baseline level of discomfort, that it also takes them longer to understand the written or verbal information being taught by the teacher, and an autistic child might reach a point where they lose the ability to communicate effectively. I suggest that neurotypicals find it harder to empathise with children who have reached that point of overwhelm where they’re no longer able to speak because it’s hard for them to imagine what it might feel like and ultimately they find it hard to accept that this isn’t a voluntary response (to some extent) what do you think?.

Children who’ve reached this point need time to decompress and self-regulate, and it might take a long time. How many teachers can show the patience that’s required to support them through this?

Now let’s contrast that with a more identifiable impairment, something we can all imagine quite easily.

Scenario 2

With the exception of Pol Pot[1], has anyone ever questioned someone for wearing glasses? No one questions their motivations, considering whether they’re doing it for attention, to be awkward, or that they’re not trying hard enough to see. Requiring adjustments for our eyesight Is in no way some ploy to gain an unfair advantage over everyone else in the room either, is it?

Clearly that’s absurd. Glasses don’t give children with poor eyesight an advantage over the children with perfect vision, and you have no control over your own ability to see, so trying harder isn’t going to get us anywhere.

Well the same is true for autism.

Requiring a quiet room for exams and having permission to take movement breaks isn’t giving autistic kids an unfair advantage over their fellow students, and controlling their responses to sensory inputs isn’t possible; it’s totally involuntary.

So what makes these two scenarios so different?

I think it’s something around how easily we can imagine what it’s like to experience these things. I’m sure most of us can quite easily imagine what impact poor eyesight would have on our learning even if our eyesight is perfect. We also know exactly how we can help a child with poor eyesight to be able to access their lesson like everyone else, but imagining what sensory overload and situational mutism is like is a whole different story.

I suggest that it requires a higher level of empathy to empathise with experiences we find hard to imagine, but I also suggest that with self-reflection and a few pointers (see below) we can all develop this skill.

Conclusion

It can be hard to imagine what it’s like to experience the world the way an autistic person does if you’re not autistic. But that doesn’t mean that they’re making things up about what they find challenging, the barriers they face or having any control over their involuntary responses.

Dismissing or invalidating someone’s experiences demonstrates a lack of trust in them, which leads to a lack of trust of you in return.

This breakdown of mutual trust and the trauma it leads to is perfectly preventable if the people who are reluctant to accept autistic challenges try harder to empathise.

Key takeaways:

If you don’t understand someone’s experience, ask them how they are feeling and be willing to believe them.
We all experience things differently, just because you would react differently, doesn’t mean someone else’s reaction is wrong.
Consider what possible motivation a child would have for making up the fact that they find something challenging, and then be willing to accept that if there is no ulterior motive, perhaps they’re telling the truth?
Be curious and try to understand what else might be going on to cause them to react differently.
Show empathy. Imagine how hard it must feel for autistic children, especially once they become overwhelmed. What can you do to help them to self-regulate?
Challenge yourself to leave any judgements or biases aside while supporting a child who experiences things vastly differently to you.

[1] Pol Pot and the Khmer Rouge regime, executed people who were stereotypically thought of as having intellectual qualities, such as people who wore glasses or speaking multiple languages, out of fear that they would rebel against the Khmer Rouge.