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Is there an autism epidemic?

One of the issues that autistic people face is the idea that autism is an “epidemic” occurring at higher and higher rates as time moves forward. While it is true that the number of diagnostic referrals (and diagnoses themselves) is increasing quite dramatically, the idea that autism is an epidemic is incredible harmful. It highlights the societal belied that autism is some kind of disease that poses a threat rather than being a natural variation in the human brain. In this article I hope to answer the question as to whether this is a fair analysis.

Genetic factors for autism

To understand the genetic factors around autism, I first bring to your attention studies conducted on twins. Frazier et al (2014) looked at heritability and environmental factors surrounding Autistic twins. They found that monozygotic (identical) twins were likely to both be Autistic, twice as like as dizygotic (non-identical) twins. This suggests that there is a strong genetic factor in the emergence of autism rather than environmental factors taking precedence. To summarise, it is likely that autism is inherited genetically rather than being something triggered by variable in the external environment.

What are the heritability rates for autism?

To consider the likelihood of autism being inherited, I considered another twin study by Tick et al (2016). This study found extremely high heritability, with their estimates being 64%-91%. Supporting this is Sandin et al (2017) which found a heritability rate of 84%. To consider this is simple terms, it is extremely likely for autistic parents to have autistic children. In fact, most of the children birthed by Autistic parents will themselves be Autistic.

How many Autistic people are there in the UK?

I recently wrote an article that cited studies finding that there were over 450,000 diagnosed Autistic people in the UK. This research went on to estimate that there could be as many as 1.197 million undiagnosed Autistic people in the UK. Taking both of those figures into account, we can infer that there are around 1.5 million Autistic people living in the UK, both diagnosed and undiagnosed. There is limited data around how many Autistic people are having children, but the existence of charities such as Autistic Parents UK implies that this is a significant aspect of Autistic experience. In the absence of better data, I will assume that Autistic people are having children at roughly the same rate as non-Autistic people.

What is the average number of children per family in the UK?

This website suggests that on average there are 1.74 children per family, with the Office for National Statistics finding that 42% of families have one or more dependent children, equating to some 8.2 million families. Suggesting that in the UK there are around 14.268 million children in the UK. With the ONS finding that there are 19.4 million families in the UK, and knowing that the statistics here only look at dependent children, the 1.74 figure can be inferred to be relatively accurate.

Concluding thoughts

Autism is increasing because Autistic people are reproducing. Even if only half of 1.5 million(ish) Autistic people in the UK had children, on average that would produce almost another 1.3 million Autistic people if the heritability rates are accurate. I believe that the way towards tackling the “epidemic” argument and removing stigma from Autistic lives is to do robust research into Autistic families. We are not a disease or an epidemic, we are humans. Like any other human, many of us will go on to have families of varying sizes. Given this, we can not be surprised that the number of Autistic people is increasing. It’s time the world caught up with us and supported us, rather than empower the people who seek to eradicate us.

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.

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