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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.

Spectrum 10k researchers have given up on hiding their eugenics agenda

CW: Termination of pregnancies, amniocentesis, pre-natal testing, eugenics

Edit: This is just a focus group at this point, but it is terrifying none-the-less.

Spectrum 10k is being run by a team from the Autism Research Centre (ARC) attached to the University of Cambridge. The scandalous research project has been a source of contention for a couple of years now, with researchers showing their flagrant disregard for the wishes and wellbeing of Autistic people in overt ways. Despite their claims that this project has no ties to eugenics, a leaked communication from ARC has now confirmed their intentions.

Find images below

The above images detail a project that will use amniocentesis to investigate hormone levels during pregnancy and how that relates to the development of autism in infants. This is troubling for a number of reasons.

You have probably heard of amniocentesis if you have had a child. It’s a test that involves taking a sample of amniotic fluid from the womb. Typically, this is used to test for Down Syndrome. If a pregnancy is found to test positive, the mother is offered the opportunity to terminate the pregnancy. Regardless of the complex reasons why someone might choose this, it is still eugenics.

Amniocentesis represents a huge ethical issue in medicine. Not only does it put the viability of a pregnancy at risk, it also provides parents with the opportunity to abort disabled children. It raises questions about quality of life, and right to life. Many people have this test, it is an everyday occurrence. Unfortunately, most people are not active in disability communities and can not conceive of why such practices are harmful and upsetting to our community.

In fact, doctors and midwives can be very pushy about amniocentesis. I have heard stories of mothers being tricked into consenting to the test. It highlights an issue where disabled people are viewed as less-than human and as a drain on resources and parental wellbeing. We ate told it is a kindness to prevent the birth of disabled people because we have been conditioned into believing that disability is a tragedy.

So why is it significant that the ARC is running this study?

It has one logical conclusion. The development of a pre-natal test for autism, that will allow for the termination of Autistic pregnancies. When you consider this alongside the Spectrum 10k project, it really shows just how desperate this research centre are to end the existence of Autistic people.

This sort of research comes from the twisted “ethics” of people who are so unaware of their own privilege that they are unable to conceive of Autistic people’s humanity. These people do not care for Autistic people. They only care about eradicating us. Neuronormativity in society has reached a terminal point, where we are willing to end the lives of people who are unlikely to conform to cultural norms.

If you threaten the status quo, they threaten your right to life.

Simon Baron-Cohen and his team are eugenicists. There isn’t any question about it. The research that has come from them over the years has been harmful (to say the least), but now the future of the Autistic community is in jeopardy. All Autistic people have a right to life, no matter how inconvenient it is for others.

I ask any of you who are approached to join this project to refuse. Tell them why they are harmful. Tell them why we will not stand for this flagrant disregard for the sanctity of Autistic lives.

We owe it to the Autistic people yet to come to make this kind of research unviable. It needs to have career ending ramifications for anyone who tries to end us.

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