Don’t Confuse Self-Advocacy with Solo-Advocacy: Self-Advocacy Is a Team Sport

Written by Alex*

This is the final blog in a trilogy challenging commonly held misconceptions regarding Independence, Resilience and Self-Advocacy. The author’s unifying theme is that the wellbeing of all children, but especially those who are Autistic, is dependent on understanding and honouring developmental needs, within an attachment relationship. Relational safety, encompassing an individualised approach based in mutual respect, is the prerequisite for success.

Self-advocacy, defined as “the action of representing oneself or one’s views” (Oxford Dictionary online) is a fundamental life skill.

With reference to children in the education setting, however, the development of this skill can be complicated by unreasonable expectations, and inadequate opportunity for input from attachment figures outside the classroom.

We remove small children from their primary caregivers, put them in institutionalised education settings which do not meet their needs, and then expect them to speak up about what is wrong, when they can’t even put it into words, let alone explain it to an authority figure.

We place children in the care of mostly well-intentioned teachers, who unfortunately do not receive much training in child development – neurotypical or otherwise – and who may lack compassion or perspective on the experience of the small child in an intimidating place – an experience which is amplified to anxiety-inducing levels for an Autistic student.

Let’s explore the following scenario:

A 5-year-old Autistic girl, Sarah,  experiences “school can’t” on Tuesdays. This is due to anxiety resulting from being expected to ask an older student to pair up with her during “Buddy” class. Sarah’s teacher asks her to provide a possible solution to this issue.

Sarah is unable to do so for reasons, which may include:

• difficulty in focussing on what the teacher is asking;
• not knowing what solution might be reasonable;
• prior experience of giving suggestions which have been dismissed;
• experiencing situational mutism or anxiety when talking to an authority figure;
• and/or simply having the developmental capacity of a 5-year-old, Autistic or otherwise.

Her teacher suggests that, while joining a busy and chaotic line at the end of lunch, Sarah could remind the teacher to support her during the upcoming Buddy session. The teacher is trying to encourage “independence” in Sarah by making her responsible for organising and implementing the accommodation from the teacher, without understanding barriers such as the executive function demand of remembering to ask, and social anxiety in approaching the teacher.

Agreed accommodations should be in place without requiring the child to ask for them – this demand effectively nullifies the accommodation and renders the activity inaccessible.

The teacher is also trying to develop “resilience” by encouraging Sarah to try something new and make connections with older students. In reality, they are pushing Sarah into the intense and overwhelming sensory and emotional discomfort of a combined class with more people and noise, unpredictability (the “buddy” varies each session), fear of working with an older child, and anxiety of having to approach an older student and ask if they will pair with her.

Mistakenly, the teacher thinks that Sarah agreeing with this plan constitutes “self-advocacy” in that the plan has been made between teacher and child.

If Sarah’s attached parent had been part of the conversation, they could have pointed out all the ways in which the plan was not respecting and accommodating Sarah’s needs and was unlikely to succeed.

The parent could have given accurate and effective representation for Sarah by acting as her advocate, however, the parent’s opinion was not valued enough to be considered, the so-called “child-led solution” enshrined as a goal in Sarah’s Individual Education Plan.

Result:

Sarah is unable to attend school on Tuesdays due to paralysing anxiety, as predicted by her parent. Sarah’s needs are honoured by her parent, who rearranges their schedule to accommodate staying home because the school is unwilling to engage in useful dialogue regarding Sarah’s actual needs. (Her parent is painted as overprotective and overinvolved.) The teacher steadfastly refuses to provide any accommodation unless Sarah asks for it.

I would argue that at early primary level, completely independent self-advocacy is not a developmentally realistic goal even for neurotypical children.

In Autistic students, social anxiety, situational mutism, and lagging executive function skills such as recall are extra impediments. Scaffolding is required. We need teachers listening to parents as well as children and assimilating the information.

Effective self-advocacy requires interoceptive capacity, an intimate understanding of your sensory profile and emotional needs, the ability to access this knowledge including when in overwhelm / meltdown / shutdown, and a way to communicate it to people who can help you.

Adults absolutely struggle with this – all of us who reflexively respond to others with a ”yes” before we have even considered our own thoughts and feelings. This may be due to alexithymia, or just years of prioritising the needs and opinions of others. It is critical to teach our children to self-advocate but it needs to be done in the right way and in my opinion, requires the assistance of an attached adult who can support the child in learning to identify, validate, and express their needs.

Finally, I cannot leave this topic without calling out the massive hypocrisy which exists in the juxtaposition of the overemphasis on self-advocacy in the school environment, yet when the child actually manages to express a need, it is minimised or dismissed. I’m referring to teachers saying things like:

“I can’t help you unless you stop crying”;

“You can’t go home early – that’s not what you do”, with no attempt to soothe, identify the unmet need, or reduce arousal. This constitutes gaslighting.

The message the child receives is that their needs are trivial and do not actually matter. In time, they no longer trust their own assessment of their needs.

This creates learned helplessness. It also precipitates massive anxiety. There is no psychological safety in such an environment. The solution is simple.

Adults (teachers, parents and other caregivers) need to demonstrate more compassion and less judgement of each other.

Delineating a child’s needs requires a close relationship, and an abundance of  deeply connected time spent considering what outward behaviours might be telling us about the child’s sensory and emotional state.

We actively model this process of identifying our child’s needs, so they learn to do it too, and we advocate for them, then with them, until such a time as they may be able to do it themselves. Please also note the fundamental, utmost importance of AAC (Augmented Assistive Communication) here for non-speaking individuals.

Parents, trust your children and your own assessment of what their behaviour means. Teachers, trust supposedly “anxious” parents. They’re acting “overinvolved” for a reason.

Please stop trying to “manage” us and our children. Let’s be collaborative and curious together, for advocacy’s sake.

* The author has chosen to publish under a pen name. Many of our writers only feel safe disclosing their Autistic identity to a select few due to the enduring stigma and prejudice faced by Autistic individuals. We hope by sharing their stories, together, we can help dismantle this stigma and one day, achieve true Autism acceptance.

Read the first blog, ‘Why “Independence” Is a Loaded Concept – and the Critical Role Dependence Plays in Wellbeing’ or the second blog in this trilogy, ‘The Development of “Resilience” Requires Attachment and Nurture, Not Desensitisation’.