Caring for an Autistic child should begin with something very simple: getting to know the child in front of you.
Not the diagnosis. Not a list of supposed “autistic behaviours”. Not what a textbook says an Autistic child should or shouldn’t be able to do.
The actual child.
Every Autistic child is different. They will have their own personality, interests, communication style, sensory experiences, strengths, fears, preferences and support needs.
There is no single approach that will work for every Autistic child, but there are some principles that can help us provide support that is respectful, safe and genuinely centred on the child.
These ten guidelines are a good place to start.
This can sometimes be uncomfortable to hear, particularly if you have already completed autism training or have years of professional experience, but it is important.
Ask yourself how much of what you know about autism actually came from Autistic people.
Historically, much of the information about autism was produced by non-Autistic researchers and professionals observing Autistic people from the outside.
Autistic people were studied, assessed and discussed, but we were not always included in deciding what those observations meant.
That matters.
Someone might observe a child covering their ears and describe it as an “autistic behaviour”. An Autistic person may be able to explain what sensory overload actually feels like and why covering their ears is a perfectly reasonable response to an environment that feels painfully loud.
Someone might observe a child avoiding eye contact and decide that they need social skills training. An Autistic person might explain that eye contact can be distracting, uncomfortable or so cognitively demanding that it actually makes listening more difficult.
The observation might be accurate, but the explanation can be completely wrong.
This is why Autistic perspectives matter.
It does not mean that parents, teachers, therapists, psychologists and other professionals have nothing useful to contribute. Of course they do.
It means that information about Autistic people should include Autistic people.
If your autism training contains almost no Autistic voices, that should make you curious about what might be missing.
We hear the phrase “evidence-based” constantly in autism services.
Evidence matters. Research matters. But we also need to understand what the evidence actually measured.
A study can demonstrate that an intervention changed a behaviour without necessarily demonstrating that the intervention improved the person’s life.
Those are not always the same thing.
If a child stops stimming, for example, was that a positive outcome because the behaviour disappeared? Or did the child learn that their natural movements were unacceptable and become better at suppressing them?
If a child makes more eye contact, does that automatically mean communication improved?
If a child becomes more compliant, do they feel safer, or have they simply learned that saying no doesn’t work?
When looking at research or programmes, ask what success actually meant.
Was it reduced distress?
Better communication?
Greater independence?
More autonomy?
Improved quality of life?
Did the child feel safer?
Were Autistic people involved in developing or evaluating the approach?
Were negative experiences and possible harms investigated?
Research should help us understand people, not simply give us a scientific-sounding reason to make them behave differently.
Autistic children can become distressed for all sorts of reasons.
Sensory overload, pain, uncertainty, communication difficulties, unexpected changes, demands, exhaustion, hunger, fear, anxiety and feeling misunderstood can all play a part.
The important thing is not to dismiss distress as simply “the autism”.
Autism is not an explanation for everything an Autistic child experiences.
If a child regularly becomes distressed in a particular environment, at a particular time or around a particular activity, become curious.
What happens immediately beforehand?
Is the environment noisy?
Are demands increasing?
Is the child tired?
Are they being rushed?
Has something unexpected happened?
Could they be in pain?
Are they trying to communicate something?
Have they been holding things together all day and finally reached their limit?
Sometimes adults become so focused on the visible behaviour that they miss everything that happened before it.
Instead of asking, “How do we stop this behaviour?”, try asking, “What is making things difficult for this child right now?”
That question can lead you somewhere much more useful.
A meltdown is not a tantrum, manipulation or a child deliberately behaving badly.
A meltdown happens when someone’s capacity to cope has been exceeded.
During a meltdown, the goal should not be teaching a lesson, enforcing consequences or demanding an apology.
The priority is safety and reducing whatever pressure you can.
Reduce noise. Reduce language. Reduce demands. Give the child space if that is what they need. Remove unnecessary people from the situation. Make the environment feel as safe and predictable as possible.
Most importantly, remember that the child is having a difficult time, not giving you a difficult time.
Afterwards, don’t immediately turn the experience into a lecture.
Recovery matters.
When the child is settled and has had enough time, the adults can look at what happened beforehand and consider whether something could be changed next time.
Sometimes meltdowns cannot be completely prevented. Autistic people live in a world that can be unpredictable, demanding and sensory intense.
The aim should not be to blame somebody whenever a meltdown happens. The aim is to understand the child’s patterns, recognise signs of overwhelm earlier and make their environment as supportive as reasonably possible.
Autistic children are still children, and children are human beings with boundaries.
They should have as much control over their own bodies as is safely possible.
That includes how they sit, stand, move and regulate themselves.
A child may listen better while pacing.
They may need to rock.
They might fiddle with something while you speak.
They may need to stand instead of sit.
They might look away from you while listening.
They may need to flap their hands when excited.
None of these things automatically needs correcting.
Adults move while thinking and listening all the time. We doodle during meetings, tap our feet, walk while talking on the phone and listen to podcasts while driving or exercising.
We don’t suddenly lose our ability to process information because our bodies are moving.
Autistic children should not have to perform “good listening” by sitting completely still, keeping their hands quiet and looking directly at an adult.
What matters is whether they are able to engage in a way that works for them.
An accommodation exists because somebody needs it to access an environment.
That means it should not be something they have to earn.
If a child needs ear defenders because the environment is overwhelming, taking them away as a consequence makes no sense.
The same applies to communication devices, sensory supports, movement breaks and other necessary accommodations.
Imagine taking someone’s glasses away because they didn’t complete their work.
We would immediately understand that the glasses are not a reward for good behaviour. They are something the person needs in order to see.
Try to think about disability accommodations in the same way.
A child should not have to demonstrate distress before being allowed to use something that helps prevent that distress.
Where possible, accommodations should be readily available and children should be supported to understand and communicate what helps them.
A meltdown rarely begins at the moment it becomes obvious to everyone else.
There are often signs beforehand.
The difficulty is that these signs can look different for every child.
A child might become quieter.
They might become louder.
They might stim more.
They might stop communicating.
They may start pacing.
They might repeat questions.
They might become unusually rigid about something.
They may try to leave.
They might cover their ears.
They could become silly, restless or apparently “defiant”.
They might repeatedly say no.
Sometimes a child who appears perfectly calm is already using enormous amounts of energy to cope.
This is why knowing the individual child matters so much.
Over time, adults who pay attention can begin to recognise that child’s early signs of overload.
Responding at that stage can be much more helpful than waiting until the child is completely overwhelmed.
A movement break, quieter room, reduced demand, familiar activity, food, drink, reassurance or simply some time alone may prevent the situation from escalating.
The aim is not to become better at controlling the child.
It is to become better at noticing them.
A child does not have to speak to communicate.
Behaviour can communicate.
Movement can communicate.
Gestures can communicate.
AAC can communicate.
Typing can communicate.
Facial expressions can communicate.
Moving towards something or away from something can communicate.
Silence can communicate too.
We need to stop treating spoken language as the only communication that counts.
We also need to remember that communication ability can change depending on the situation.
An Autistic child who speaks fluently when relaxed may find speech extremely difficult when overwhelmed.
Someone may understand far more language than they are able to express.
A child who cannot answer your question immediately may simply need more processing time.
Instead of repeatedly asking the same question more loudly or using more words, give them time.
Learn how that particular child communicates.
If you repeatedly find yourself thinking, “I have no idea why they’re doing that”, don’t immediately conclude that the behaviour is meaningless.
You may simply not understand the communication yet.
Presuming competence means starting from the position that an Autistic child may understand, learn and participate, even when they cannot demonstrate that ability in the way you expect.
It does not mean pretending everybody can do everything.
Children have different abilities and support needs.
It means we don’t unnecessarily limit somebody because of assumptions about autism, speech, behaviour or appearance.
Be careful with statements like:
“They won’t understand.”
“They wouldn’t be able for that.”
“There’s no point explaining it to them.”
“They can’t communicate.”
“They’re not interested in other people.”
Ask yourself what evidence you actually have for those conclusions.
Sometimes what looks like an inability is an accessibility problem.
A child may understand the activity but not the instructions.
They may know the answer but struggle to communicate it.
They might want to participate but be unable to tolerate the environment.
They may enjoy other people but find typical social interaction exhausting.
Presuming competence means giving people opportunities while providing the support they need.
It also means speaking about Autistic children respectfully when they are present.
Never assume that because a child doesn’t respond, they don’t understand what you are saying about them.
Before choosing any autism intervention, programme or therapy, ask what it is actually trying to achieve.
Is the goal to improve the child’s quality of life?
To give them a reliable way to communicate?
To help them access education?
To reduce pain or distress?
To make their environment more accessible?
To develop a skill that the child actually wants or needs?
Or is the goal primarily to make the child behave in a more typical way?
Behavioural approaches, including ABA and some programmes based on behavioural principles, are highly controversial within the Autistic community. Many Autistic advocates have raised concerns about approaches that prioritise compliance, suppression of Autistic traits or making children appear less Autistic.
At the same time, programmes and practitioners using behavioural terminology can differ considerably in how they work, so parents should look closely at what actually happens rather than relying only on the name of an approach.
Ask questions.
What happens when the child says no?
Can they leave an activity?
Are harmless stims discouraged?
Is eye contact required?
Are accommodations ever removed?
Is food being used as a reward?
Is distress interpreted as “non-compliance”?
Are the child’s own goals considered?
How is consent or assent respected?
How is success measured?
What happens if the child does not want to participate?
And importantly, what do Autistic people who experienced similar approaches say about them?
No therapy should be above scrutiny simply because somebody describes it as “evidence-based”.
Perhaps the most important principle in this entire article is this:
When an Autistic child is struggling, don’t automatically begin with the assumption that the child needs to change.
Look around them too.
Look at the environment.
Look at the demands being placed on them.
Look at how people communicate with them.
Look at sensory factors.
Look at whether they have enough time to process information.
Look at whether they feel safe saying no.
Look at whether their communication is being recognised.
Look at whether they are exhausted.
Look at whether something hurts.
Look at whether the adults around them actually understand their Autistic communication.
Sometimes we spend enormous amounts of time teaching an Autistic child to cope with something when we could simply make that thing easier for them.
If you are a parent, teacher, carer or professional and some of this challenges what you were previously taught about autism, that is okay.
Most of us have things to unlearn.
Our understanding of autism has changed enormously and it will continue to change.
Nobody should feel embarrassed about changing their approach when they learn something new.
What matters is being willing to listen.
Ask where your information about autism came from.
Ask whether Autistic people were involved.
Listen to more than one Autistic voice because we don’t all agree with each other and we don’t all have the same experiences.
Question approaches that value compliance more highly than communication.
Question whether something described as a “problem behaviour” might actually be a person trying to communicate distress.
And keep coming back to the individual child.
What do they enjoy?
What makes them feel safe?
How do they communicate?
What overwhelms them?
What helps them recover?
What are they interested in?
Who are they comfortable with?
What accommodations help?
What are they trying to tell you?
You don’t need to make an Autistic child less Autistic in order to support them.
You need to understand the child in front of you.
That is where good support starts.
‘My Self, My Space: Building confidence and control in young Autistics’
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