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Self-advocacy – Helping autistic students speak for themselves

Abstract illustration of two teens receiving personalised instruction from a teacher, representing self-advocacy

Debby Elley explains what schools can do to help pupils with autism foster skills of self-advocacy and secure their futures…

Debby Elley
by Debby Elley
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Sometimes, we can have a fairly literal interpretation of what it means to prepare for the world of work. In the case of autistic pupils, however, educators need to work on a much deeper level.

If a youngster has different needs from their average future co-worker, then the biggest favour our schools can do for them is to teach them self-advocacy.

This is an essential component of independence. It could well make all the difference between quitting at the first hurdle and retaining employment. Here, I’ll outline seven distinct stages through which self-advocacy can be taught.

1. Recognising dysregulation

Before you practise self-advocacy, you need to have a good understanding of how you’re being affected by your environment. You also need a keen awareness of when your body and mind are feeling overloaded.

Some schools will use ‘traffic light’ images to help young children identify how they’re feeling at each stage of emotional arousal. They’ll encourage them to point at ‘green’ to signify calm and ‘amber’ to warn teachers of growing distress.

These can still play a role when they’re older. However, be sure to first talk to them about how their body and mind feels at each stage – from ‘calm’ to ‘overloaded’ – and how this might come across to others.

Don’t assume that pupils will know how their mental state affects them physically. I’ll never forget the time I suggested to my autistic son that his stomach ache was probably linked to anxiety. It was as if a lightbulb had suddenly been switched on.

Personalise your traffic light diagram. How do they know when they feel calm? Ask them to think about the nature and pace of their thoughts. Help them to tune into their breathing and muscular tension levels. What starts to change when they feel anxious?

One person I know twiddles her hair. Another starts swaying from side to side, in an effort to find some sort of equilibrium. My own son used to fold his arms tightly, literally wrapping himself up. These are subconscious actions; raising a person’s awareness of them will enable them to spot and report dysregulation.

The traffic light system can be introduced to very young children in a simple way. However, it can be worth revisiting in secondary school, as young people start to articulate their emotions and behaviours in greater depth.

2. Identifying stressors

Maturing to the stage where self-advocacy comes naturally involves being able to identify what exactly it is that switches you from green, through to amber and then red, mood-wise.

Most of us actually aren’t this self-aware. Unfortunately, in this respect at least, we tend to expect far more from our autistic population than we do from anyone else. That’s because we can generally guess the causes of distress for people whose responses are similar to our own – but often not for those whose triggers may be different, and whose internal alarms may be more sensitive to external stimuli. It therefore falls to them to be able to accurately pinpoint where they’re at.

According to Gareth D. Morewood (with whom I co-authored the book Championing Your Autistic Teen at Secondary School), great schools will compile ‘Stress Support Plans’ with input from teachers, pupils and their carers. These identify potential stressors and strategies for heading them off before they become problematic, and present an ideal opportunity for working with the pupil alongside their parents and encouraging self-insight.

You may need to dial down the parent voice so that the student’s can be heard more clearly. As parents, we won’t be setting out to steal our children’s platform – it’s just that advocating for them can become so hard-wired that we might need a gentle nudge to remind us that our maturing adolescent might now be able to represent themselves. The words ‘Let’s hear it from them…’ can a subtle way of redressing that balance.

3. Finding strategies

At primary school, children’s calming experiences will typically result from decisions made by adults. As a maturing self-advocate, they should be encouraged to actively note the effects of various calming strategies for different situations.

The day after they’ve headed off overload, have them analyse the strategy that proved successful. I’ve found that assigning scores out of 10 to ‘How I felt before’ and ‘How I felt afterwards’ is especially useful, since this helps to keep things objective and enable recent experiences to be compared with past ones.

To support this process, help pupils identify not just what’s important to them in a looming crisis, but also any activities, items or environmental factors that help them retain a sense of stability and control. It could be anything from knowing they have ear defenders within easy reach, to understanding what they must do in order to move a quiet spot, without having to go through a long-winded permission system.

4. Explaining it to others

In Just the Job! – a new book I’ve co-written with Maura Campbell – we point out that explaining aspects of your autism doesn’t mean apologising for it. If you tell someone that the buzz from the air conditioning is annoying you, they might not be all that receptive to adaptations. If you tell them you have highly sensitive hearing, and that what sounds like a small background noise to them sounds like a thousand wasps on the rampage to you, they should be far more willing to help and advocate on your behalf.

To increase self-advocacy, encourage pupils to calmly explain their personal experiences if they feel comfortable in doing so. During teamwork activities with their peers, they may not wish to draw attention to themselves, but could perhaps be encouraged to make suggestions like, ‘I prefer to be the observer in this one, but I can take notes?’

Identifying how they can use their strengths to enhance their focus and minimise discomfort – all the while communicating that to others – is genuine work experience!

5. Persuasive presentation

When discussing adaptations in Just the Job!, we use the terms ‘Poor Cinderella’ and ‘Ball Cinderella’. ‘Poor Cinderella’ lists everything she can’t do to her employer, in what looks like a list of complaints. ‘Ball Cinderella’, on the other hand, expresses herself more positively, highlighting what she can do when adjustments are made.

Doing self-advocacy well means learning how to communicate positively and persuasively. Predicting how the words you choose will land on another’s ears isn’t easy if you’re autistic, as it means taking an alternative viewpoint (the ‘aut’ in autistic literally meaning ‘self’). It would be slightly naïve to assume that someone who makes demands without first weighing up their words will work easily alongside others, but keeping quiet and saying nothing at all ultimately isn’t an option.

Learning the art of negotiation and persuasion isn’t about becoming someone different; it’s about ensuring you have the tools to be influential when it benefits you.

6. Predicting challenges

The next step towards self-advocacy is learning how to use self-insight to predict potential stressors, and coupling that with a proactive approach. This kind of initiative – when a pupil requests change – should be rewarded, even if you aren’t able to meet their exact request. Negotiating a good compromise can be an important exercise in itself.

7. Knitting it all together

The final stage of developing self-advocacy is gaining experience of putting all of these elements together so that you’re able to predict challenges, successfully communicate how you work well and manage your own needs with tried and tested strategies.

A proactive and planned effort on the part of school at knitting these learning elements together could help autistic pupils successfully transition from being victims of their environment to authors of their own success.

In the know

Effective self-advocates will be aware of…

  • The law when it comes to employers’ obligations.
  • How they feel when they’re beginning to experience overload
  • A range of self-calming strategies
  • Which environments they work best in
  • The adaptations that suit them
  • How to articulate their experiences to others
  • How to request adjustments in a positive way

Debby Elley has twin autistic sons and is co-founder of AuKids magazine; her book Just the Job! – A Light-hearted guide to office life for the autistic employee, is co-authored with autism advocate and author Maura Campbell and is due for publication on June 21st (£13.99, Jessica Kingsley Publishers)

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