Reframing Autism: Why, What, How?

Melanie Heyworth’s speech for the official stakeholder launch of Reframing Autism, NSW Parliament House

The Autistic community is experiencing a mental health crisis.

The mental health, quality of life & mortality rates for the Autistic population across the lifespan are currently among the worst of all minority groups in Australia.

Some of the leading causes for these mental health statistics are the compulsion to act like we are not Autistic, and lifelong exposure to stigmatisation, discrimination and exclusion.

Mental illness is not intrinsic to Autism.

It is not a necessary part of an Autistic identity.

It is not Autism, but people’s reaction to our Autism, and our desire to please those people, that damages us.

This picture worsens when we also realise that families of Autistic children have significantly worse mental health & quality of life outcomes than families of children with no, or even other, disabilities.

But why?

Why such dire outcomes the for Autistic population specifically?

Why such dire outcomes for families of Autistic children specifically?

Well, often, shortly after receiving their child’s Autism diagnosis, families will be recommended and seek out interventions for their child’s Autism – interventions facilitated by those who have little or no personal lived experience of Autism.

But take a pause to think about what the word “intervention” implies.

Think of what the work of “intervention” requires.

Intervention, by definition, is taking action to improve something, it implies a problem to be fixed, a difficulty to be overcome.

From the moment that a parent receives their child’s Autism “diagnosis”, that Autistic neurology is pathologised.

Even the word “diagnosis”, implies something wrong, something to be fixed, cured. We don’t diagnose a child with “giftedness”, we “identify” them as “gifted”. No, we diagnose a child with a disease, and we work to treat it, to intervene.

But the fact is that Autism is not a disease.

It is not curable.

Because it is a neurology. It is intrinsic to a person’s identity.

So, parents, from the earliest moment, are positioned to see Autism as something that needs fixing, not accepting.

And the mental health crisis in families of Autistic people needs to be understood through this lens.

But there is more to the story than this.

We know that certain intensive behavioural therapies are often recommended to parents of Autistic children as the first and most effective intervention.

But, while there is evidence to suggest that intensive behavioural interventions do change behaviour by teaching us to comply and to bury our natural Autistic selves (often called masking), there also is evidence to suggest that such interventions are linked to severe psychiatric conditions like PTSD, that they exacerbate self-injurious behaviours in children, and that they undermine children’s attempts to communicate.

So, while behavioural interventions are “sold” to parents as evidence-based, there is no evidence to prove that these types of interventions are safe and do not cause psychological damage to Autistic children.

But there is evidence to the contrary. Essentially, by intervening, by pathologising, by perpetuating the narrative of causes, cures and interventions, we do harm.

We do harm to Autistic children.

And we do harm to their families.

You see, it is often the case that “interventions” are inserted into every aspect of an Autistic child’s life, even into their home life.

They make the home an unnatural and unsafe environment.

They negatively impact on the way in which parents experience their relationship with their child, and vice versa.

They erode the parent-child bond.

Because over time, children internalise the understanding that they are not enough as they are.

They internalise the understanding that in order to be accepted and loved, they need to be less Autistic, less themselves.

Is the mental health crisis any surprise then, when we consider that Autistic children very quickly come to understand that they are unacceptable and unlovable, even by their parents, as Autistic?

“Reframing” is a concept that requires us to look on something with new eyes.
It requires a change of mindset.

When we reframe Autism, we change the frame from a traditional, medicalised, deficits view of Autism as a disorder that needs fixing, and we reframe it.

The new frame that we propose is simple:

Respect.
Accept.
Embrace.
Empower.

Our children have a right to have their identities respected, accepted and loved by their parents.

They have a right to know that their Autism is loved and embraced unconditionally.

And when they experience that respect, when they feel accepted, when they see themselves being unconditionally embraced, our whole community is empowered to flourish and to thrive.

Reframing Autism counters the pervasive emphasis on “intervention” and instead shifts the spotlight to building strength-based relationships.

We provide the opportunity for parents to connect with Autistic leaders to learn to navigate respectfully the challenges they face in parenting their Autistic children.

Our approach does not deny or minimise parental challenges.

Rather, it offers different ways to ‘reframe’ those challenges, a reframing which is informed by Autistic people’s experiential knowledge.

And Reframing Autism offers a way to “reframe” the concept of interventions.

We absolutely acknowledge that some therapies can be helpful to particular children at particular moments in their lives: speech therapy, occupational therapy, music or art therapy, psychology.

But rather than seeing the purpose of “intervention” as changing the child and “fixing”, “curing” or “minimising” their Autistic behaviour, we teach parents how to choose the right therapies which will support their child to be the best Autistic person they can be, which will nurture them to thrive.

Reframing Autism offers a way to respect, accept, embrace, empower Autistic individuals and their families alike.

We offer parents access to their child’s neurology, to their child’s internal world, access that can only be gifted by the child’s neurokin: other Autistic people. Autistic adults who were once Autistic children.

We translate the lived experience of being Autistic into the language of parenting Autistic children.

We translate the deepest hope of parents – to have happy, safe, fulfilled children – into a reality.

And we work to translate the deepest hope of the Autistic community – to be accepted and embraced as we are, authentically Autistic – into a reality.

And we can only do these things because we are unique: we are Autistic ourselves.

And the impact of Reframing Autism is already being felt.

Since July this year, we have delivered the authentic insights of Autistic adults and young people to families via webinars, face-to-face workshops, and a day-long conference, attended by more than 200 parents.

In the evaluations from a recent Autistic-led workshop, one parent spoke of how thought-provoking the session was, and how it had given them the confidence and courage to be a better parent for their Autistic child.

Another spoke of considering her child’s happiness for the first time, and the meteoric and wonderful change in her child, herself, and her family when she understood her son better, and respected his needs and his happiness.

We have also established an impressive online presence.

We have a website rich in original Autistic-created content.

We have launched a Facebook community, with more than 3000 followers, keen to learn from Autistic individuals. In the past 28 days alone, our posts have had a global reach of 150 000.

We know our message is an important one; we know that families are keen to learn more. They are yearning for their own and their child’s wellbeing.

Reframing Autism, then, is offering a powerful counterpoint to the traditional, pathologised view of Autism. It enables Autistic people to speak about their experiences in a positive, respectful and inclusive ways.

I want to return to where I started.

Autistic children are around 30 times more likely than their non-autistic peers to contemplate suicide.

The mortality rate for the Australian Autistic population is 2.06 times that of the general population, and suicide is a leading reason for this statistic.

The statistics are simply not acceptable.

They are not acceptable for any minority in Australia, and they are not acceptable for our Autistic community — my Autistic community.

In essence, this is what Reframing Autism offers: we offer a way to effect social change and to empower the Autistic community to flourish. Our reframing offers hope for change, for changing these statistics.

We invite you to support our organisation to continue our work changing lives.

We implore you to support our organisation to continue our work changing lives.