The dominant narrative in our culture around autism is one of prevention, disease, and cure. We are flooded daily with articles about hundreds of different things purported to be correlated with autism, while the most stringent peer reviewed research does not usually support these findings. Birth interventions, certain types of food, pesticides, vaccines, antibiotics – the list of unproven links goes on and on. In all of these narratives we hear about autistic people as damaged, whether it’s brain damage or gut damage. We even hear people suggest there is a more authentic person under a shell/fog/cloud of autism, just waiting to come out. Invasive and sometimes quite dangerous cures are peddled to desperate parents who sincerely want what is best for their children and believe there must be a way to free their child from autism.
As autistic people grow from children into adults, and as communication methods increase through the use of technology, we are hearing more and more from them that this narrative is harmful, in countless ways. They, and many current researchers, do not believe that autism is something separate from core identity, nor that it is something that can be cured and left behind. They believe that it is something that can be celebrated. They are also expressing that being autistic is who they are, and that you cannot erase their autism without erasing themselves. They do not believe that they are damaged. They do not believe that there is a more true self buried under their autism. This is the idea of neurodiversity and the neurodiversity movement – that there are many ways in which our brains can function and how we can interact with the world, and the typical way is not superior to other ways. Neurodiverse ways of thinking and communicating are valued and needed in this world.
That is not to say that there are not interventions and supports for autistic people that are not helpful. Occupational therapy, sensory work, and speech therapy for social pragmatics can all help a person navigate the neurotypical world in a more comfortable way, provided this is something they want.
But the other half of the equation here is making the world a safer and better place for neurodivergent people. It is not their job alone to conform to neurotypical norms – it is also the job of the neurotypical world to make accommodations and changes for them. One way we can do that is simply by asserting their right to existence as they are right now, and listening to their communication. We can watch how we speak about autism and make sure our words would not be harmful for a neurodiverse person to hear or read.
What does this mean for birth workers? To start, it means keeping a close eye on narratives and articles that we present or share to clients and in social media. I have worked with autistic birthing people in the past and they have expressed deep outrage and sadness at seeing their identities tossed around so carelessly in the media and particularly in birth specific books and articles. We should know that our clients could be neurodivergent, and may appreciate not only us refraining from sharing that narrative but also varying our communication styles so that all people feel included. This may mean:
- Providing online/text options for consultations, meetings, and ongoing communication if written word is more accessible for some clients
- Recognizing that other communication methods may be needed during a birth, when typically the social/language part of the brain becomes harder to access as labor intensifies for all people but especially for neurodivergent people
- Frequent brief, agreed upon check ins to make sure communication is not being misinterpreted
- A plan for physical touch/sensory overload addressed in a birth plan and shared with the birth team
Neurodivergent people can be welcomed into the birth world as doulas, childbirth educators, providers, lactation consultants, etc. Diversity, inclusion, listening, and accessibility are worthy goals for all doulas with both our client interactions and public commentary.
By Becky Alford, CD (DTI)