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Autistic Parenting: Parenthood in it’s infancy

This article was co-authored by David Gray-Hammond and Katie Munday

When Katie and I set out to write today, we knew we wanted to do something new. While there has been a great deal of discussion around parenting school-age Autistic children, Katie and I are both parents to younger children and feel that there is somewhat of a void in discussions around the early years or parenting an infant.

We do not position ourselves as experts, this is more of a journey into our own discoveries, the experiences we have, and sharing in the joys and struggles that so many Autistic people experience as they grow into parenthood.

“Nothing quite prepares you for parenthood, no matter how organised you are and how much the baby was planned.

The late nights, the interrupted sleep, the constant feeding and nappy changing, and the emotions of it all!”

Munday (2022)

Being Autistic and a parent is a unique and wonderful challenge. It represents a leap into unknown territory, and requires us to ask the question of how we would like to have been parented.

What is it like to parent an infant as an Autistic person?

At times being a parent can feel very surreal. There can be a disconnect between the reality of your child’s existence, and the realisation that you have created that child. Many people speak of having an instant bond with their child, but for many of us it can take time to feel that deeper connection. This doesn’t make us bad parents, it makes us human beings who are processing the reality that we are personally responsible for another living being.

Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesn’t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021).

Besides the somewhat philosophical musings of love for your child, there are some technical challenges to being an Autistic parent to an infant.

“He’s just started the ‘terrible twos’ stage – awful name but you get what I mean – and he finds it hard when Daddy leaves for work. So, he throws himself down and makes these noises which prod and poke at my very soul.”

Munday (2022)

Sensory challenges are everywhere as an Autistic parent, there are noises, smells, and for some reason babies are permanently sticky. Where the hell does the stickiness come from? David in particular struggles with sticky things, it is a sensory challenge that turns his stomach. For David, stickiness can remain for days causing him to pick at his skin and repeatedly wash his hands. This is unsurprising given the intersection of OCD with Autistic experience (which David and Katie both share, more on this intersection here and here).

Nappy changes can also be quite upsetting for Autistic parents, issues around cleanliness, olfactory senses, and children who perhaps try to escape during nappy changes can result in a very overwhelming experience. The nappy changing experience can be increasingly exhausting, especially as infants reach an age where they can begin to move around. It is easy to be hard on yourself for being overwhelmed, particularly in a context where you have to “be the calm”.

On the topic of “being the calm”, it can be frustrating trying to demonstrate emotional regulation when it is not something you excel at yourself. Autistic parenting can leave you constantly dysregulated meaning that often you have to mask your struggles for the sake of your children. While neurotypical parents may also deal with this, we have to acknowledge the monotropic split (Adkin, 2022) that can arise from doing this constantly as an Autistic person.

There are a lot of aspects of parenting an infant we could discuss, but in order to give them the space they deserve, we will address them each in separate installments of this series. In the mean time, just be safe in the knowledge that Autistic parents everywhere have different strengths and struggles, and like many things, there is no one-size-fits-all approach to being a parent/carer.

Five things I want parents of neurodivergent children to know

It can be very difficult to wrap your head around neurodiversity when you have spent your life being taught that any deviation from the status quo is a disorder. It’s all the more overwhelming when your child is discovered to be neurodivergent, and suddenly, you live on a battlefield between advocates and professionals. In this post, I hope to give you a starting point with five things that are important to know in your attempt to affirm your neurodivergent child rather than force them into what the world tell you they should be.

1. Person-first language versus Identity-first language

This has been a point of contention for as long as the neurodiversity movement has existed. Broadly speaking, the Neurodivergent community (in particular, the Autistic community) prefers identity-first language. Identity-First language requires us to stop viewing neurodivergence as an illness or disorder and instead view it as an identity.

Instead of person-first language (person with autism/ADHD), try using identity-first language (Autistic person/ADHD’er). As a community, we prefer it because our neurodivergence is inseparable from us and fundamentally; we don’t need to be reminded of our personhood. There are wider discussions around cure culture and normativity, but the information here is a good basis to start learning from.

2. Familiarise yourself with the social model of disability

Discussion of appropriate models of disability can get complicated, so I will try and explain this simply. Autism (as an abstract concept) classes as a disability. There has been a great deal of discussion around whether disability is centred in the person (the medical model) or the environment (the social model). For the purposes of starting to understand disability in the context of neurodiversity, you will need to rethink your conceptualisation of disability.

For the most part, disability arises in neurodivergent people because society and the environments it provides are inaccessible. Rather than considering your child to be disabled due to deficits, start to consider that the issue is oppression. It sounds extreme, but due to the neuronormative attitudes of society, we are held back until we can conform to perceived cultural norms.

This is largely where functioning labels arise from. The idea that people are more or less disabled comes from normative thinking, as does the medical model of disability. Speaking of which…

3. Functioning labels give you very little useful information

You have probably heard of people being labelled as high or low functioning. This is a falsehood. Primarily, disability from neurodivergence has a tendency to be dynamic. A person’s functioning depends on so many variables that different times, environments, and states of health will alter a person’s functioning.

Something else to consider is that those labelled low-functioning are considered so because they do not fit the stereotype of a person who will ever be able to contribute to society. Therefore, they are denied agency. Conversely, those labelled high-functioning are considered valuable to society despite their quirkiness and, for this reason, are often denied resources.

Ones access to humanity and support is often dictated by the functioning label you are assigned.

4. Neurodiversity covers more than autism and ADHD

Neurodiversity refers to all brains, including those considered neurotypical. Neurodivergent people are those who are not neurotypical. For more about terms and definitions I recommend this article by Nick Walker.

People who are not neurotypical also includes those with what is traditionally considered mental “illness”. It also includes things such as Down Syndrome and epilepsy. In particular, I would like you to think about how mental health has been pathologised and how we might move forward to a more inclusive society.

Onto my final point.

5. Almost anything can be traumatic

You may have heard about the high rates of trauma amongst the Autistic and otherwise Neurodivergent community. Our understanding of trauma has been heavily influenced by normative attitudes. The truth is that a wide range of things can traumatise your child.

It’s probably not reasonable to expect yourself to protect your child from every trauma, but having a trauma-informed perspective will help your child-parent relationship a lot.

I hope that this gives you some food for thought and helps you feel as though you can start your journey of learning. Remember, it’s okay to be scared, and it’s okay to make the odd mistake. Allow yourself space to admit your shortcomings, and always consider asking neurodivergent adults about things that helped then as children.

Neurodivergence is not just for childhood.

If you have found this helpful and would like to read something a bit more in-depth about normativity and its impact on neurodivergent people, please consider purchasing my book The New Normal: Autistic musings on the threat of a broken society

For further reading on my website, please check out the Creating Autistic Suffering series that I co-author with Tanya Adkin and the Neuroqueer series that I author with Katie Munday.

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