We're diagnosing autistic folks, then pretending they're not autistic.

I have families emailing me often, to share with me about how brilliant their autistic child is, including their adult autistic child. They share about how their child works, studies, is an artist or a musician or enjoys volunteering, among other things.

But then, there is typically the follow up question “How can I encourage them to work more hours?”, or “How can I get them to go out more?” or “How can I get them to go to school?”, etc.

I get it. As parents, we want our children to be happy; to be thriving.

But we don’t get to define their happiness. They do.

Autistic people have a right to autonomy, and agency over themselves and their lives.

When I made the choice to become a parent, of course I did so with the assumption that life would pan out in a very standard, neuronormative way.

Of course this hasn’t been the case. It’s been chaotic, joyful, challenging, connected, terrifying, empowering and all the things that life has offered me in parenting autistic children.

I likely will most definitely have at least one of my children living with me long term. And I’m good with this. I don’t dwell on the fact. I spend my days now, building relationships and community, a sense of belonging for my children and a sense of positive and proud autistic identity so they’re able to intuitively find their neurokindred as they grow and develop.

Do I ever worry about this? Yes. But rarely.

As an educator and autistic adult, I cannot emphasise enough the need for our children to be taught as part of sexual education that babies; children can and will be disabled as well. Disability is a naturally occurring variation of human being and human development. The very idea that we aren’t addressing this with our youth, is ableist within itself and fails coming generations of disabled people.

There are significant differences in what happiness, what thriving looks like for the autistic person. As an autistic person myself, I require a significant amount of downtime, alone time. I burn out easily. I live with chronic co-occurring conditions that went undiagnosed for much of my life, becoming worse as a result.
I live with and manage chronic anxiety among other forms of neurodivergence including ADHD, PDA and tourettes.

Working, volunteering, attending school as an autistic person is absolutely incredible. It truly is. And it is extremely challenging. It requires a phenomenal amount of processing, and emotional and physical energy.
Constant transitions, the unknown, managing other peoples’ energies, directions, changes, changes to the environment, managing and understanding expectations from others and being expected to think and do as neuronormative folks do.

Our supports, our capacity, our ability changes often. It fluctuates from moment to moment, hour to hour, day to day, week to week, so on and so forth.

There are no concrete ‘levels of functioning’ or ‘levels of required support’ that can be reliably applied to any person. We don’t start at beginner and move upwards, consistently. Our pathways, our development is not linear.

For this reason, we practise living our lives as an autistic family from moment to moment in terms of capacity.
At present, one of our children is attending school when they can manage it. Maybe two days per week just for the morning. They may be able to attend more at a later stage, and they may not.

And all we can do is radically accept this.

I personally, have never been able to successfully work for another person or business ongoing, long term. This caused me a lot of pain and feelings of failure earlier in life until I learned more about being demand avoidant and even more about how to construct my life in such a way that I am able to thrive.

Of course this comes down to a level of privilege. And working in ways that are aligned with my capacity, doing something that doesn’t feel like work. I now of course own my own company, work long hours (hyperfocus and monotropism) and love what I do.

The point is, every autistic person is different. Some of us will love school, some of us will be traumatised by it.
Some of us will need the routine of working for others to feel regulated and happy, and some of us will slowly die inside at the mere thought of giving up the only life we have as ourselves to help someone else build wealth (did I say that out loud?!).

People are not identified or diagnosed autistic to then go back out into the world as if they are not.
We are doing this. We’re diagnosing children as autistic and sending them back into school systems that require evidence of their need for accommodations. Just that very word ‘accommodations’ is indicative of a blatant power imbalance. Accommodations on offer to autistic children are typically considered short term with a view for them to need less and less support along the way. As though autism will magically subside or disappear when we support people.

Being autistic means something. It means I have a brain, nervous systems; a neurobiology, a way that is different. I need to live my life my way. My autistic way. I’m not neuronormative.

Autistic folks are NOT neuronormative, and we’re never going to be.

I know the thoughts, concepts and ideas that degrade and dehumanise disabled people in support of capitalism. Bludger, loser, no hoper, etc etc. Those who cannot do as all are expected to do; their worth and value as humans tied into the idea that they must give up their lives to do as expected, otherwise they’re less than. Work, work, work.

Letting go of the idea that we have to mould and shape our autistic children to be anything other than who and what they are creates incredible shifts within us.

Please, folks. Allow autistic people to be as they are, on their own timeline of development. We all have children knowing we will support them as needed.

We don’t have to feel pressured to build our children up to be full time workers, academically inclined or social butterflies.

They are enough as they are, and we are enough as their families.

KF x

Photo by Apostolos Vamvouras : person-wearing-two-different-shoes

Looking to learn more about parenting a PDAer?

Our signature program, inTune with PDA (pathological demand avoidance) is now open for registration.
Visit www.kristyforbes.com.au/PDA for more, or click the image below.