Recurrent miscarriage and being autistic

Rachel, 33, from Scotland shares her experience of recurrent miscarriage and being autistic.

Rachel and baby

My husband and I began our journey to have children shortly after getting married in August 2016. I was desperate to be a mother. 

I planned with obsessive detail

I am on the autism spectrum and I am very aware of my need for structure, detail and to be able to plan for events. While trying to conceive, I became hyper focused on logging symptoms, testing, and monitoring everything I could. I became very rigid and it became detrimental to my well-being. At times I went 2 or more nights without sleep. I began planning with obsessive detail – I had a full maternity leave spreadsheet logging our finances and what we needed for our future child. I even had due dates worked out for every month for 6 months ahead.

Our little girl was born in February 2018.

Trying again

After some recovery time and settling into family life, we decided to try again. We fell pregnant in our first cycle, which was very fortunate as I was dreading the 2 week wait and obsessiveness that I knew I would fall victim to again.

Unfortunately, at around 6 weeks I went to the toilet and there was blood. I knew instantly that something was wrong. The bleeding didn’t get excessively heavy and I felt no sensations at all.

With my first pregnancy, I felt the pregnancy from before I got the positive test. I was told it wasn’t possible, that it was too early to tell. But I knew my body, and I was right.

Many autistic mothers have shared that they became very aware of their internal body state and knew things about their pregnancy before the textbooks said they should.

All my symptoms had disappeared a couple of days before, but I ignored it. I tested the next day and got a negative pregnancy result.

Grieving and seeking support

I was devastated. I am quite an open person, if anything I over-share, so some of our close family and friends knew. Sharing our news with them was very difficult but allowed me to grieve and seek some form of comfort in exploring my own thoughts externally.

We were told it was likely down to chance and just ‘one of those things’ so we decided to try again. I was pregnant again immediately. I didn’t have a period in between, and this made it difficult to predict the gestation. I really struggled with the lack of confirmation of dates, and the unknown. I found it extremely anxiety provoking.

Because of our first loss, we were offered an early reassurance scan. Sadly, I found out that I had experienced a missed miscarriage. I started medical management and was sent home. The miscarriage was fast, and the pain was intense. The physical process was much more painful than my first loss. I don’t know if this is a typical experience or if I was hypersensitive at this time, as my sensory profile fluctuates especially at times of stress.

Our third loss

Our third loss happened in October 2019. We waited 3 months before trying again and I fell pregnant in cycle 1, and I really felt pregnant this time. It felt like my first and only full term pregnancy which I found reassuring.

However after another early reassurance scan, we found out that baby was measuring small. The pregnancy was unlikely to proceed. I was booked in for surgical management a few days later.

‘Miscarriage admin’

It was such a difficult time - I honestly felt like the world was against us. As I’d now had 3 miscarriages, I was eligible for more specialist support. I wanted to know why these miscarriages were happening. We were referred to the recurrent miscarriage clinic straight way.

Fast forward 2 months and I hadn’t heard anything. I then had to engage in what I call the 'miscarriage admin'. The last thing I wanted to do at that time was chase for medical appointments, results and information. After lots of calling and chasing, I finally got an appointment with the recurrent miscarriage specialist.

Unfortunately, she couldn’t give us a prognosis. Instead, she made a referral to a genetic specialist. After more waiting, we learned that there would be a long wait for that appointment.

We’re still waiting for the appointment. I worry that the horror of all this 'miscarriage admin' may be useless.

It feels like the whole system is reliant on those suffering to push to gain the answers they deserve.

Being on the autism spectrum

I don’t believe my experience to be exceptionally different to other mothers who have experienced loss. However, from discussing with other mothers on the autism spectrum the areas that are significantly different from the typical population, one of them is the intensity of sensory feedback - for me this was often not getting the signals, I was hypo sensitive to much of it.

The other aspect is grief. I think I have personally been very fortunate due to sharing my experiences with others and not feeling so isolated. However many on the autism spectrum have reduced social networks as it is. This only adds to the isolation and detriment all this causes to mental health.

A few people on the autism spectrum have also explained that one of the hardest aspects for them to deal with was processing.

Autistic processing can be very different to the average person's, and some may not process what has happened immediately or even within the weeks and months that follow the loss.

More needs to be done to understand and support autistic mothers who experience miscarriage and not dismiss it as 'well everyone feels like that'.

Read more miscarriage stories

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