Autism & Grief – My Story

In 2015, I found out I was having twins instead of our expected third baby. My older children were 8 & 6. Once I had had time to process this information (and we sorted the car out for four children) I began to look forward to their arrival and get slightly excited. Sadly, at the 20 week scan, Oscar was diagnosed with a heart defect which meant he would not survive the pregnancy. He died at 27 weeks. I delivered them at 33 weeks and 2 days and Felix was doing well, 4lb 6 oz and no issues. Unbelievably at 5 days old, he developed NEC and died 12 hours later.

I had my rainbow baby 18 months later in 2017 who is now a lively 7 year old.

Over the Covid period, my eldest son was having some issues returning to school and after a great deal of online digging, we discovered he was autistic with a PDA profile (Pathological Demand Avoidant – appearing much more sociable and less autistic on the surface but with an extreme avoidance of both external and internal demands) and in the course of all my research, I was also autistic with PDA. It had been a bit of a long standing joke with my husband about some of my quirks and social awkwardness and I had been characterised as stubborn and awkward since I was a young child but I hadn’t really taken it seriously.
Due to the delays with the NHS, we paid for my son to be diagnosed privately. Having a diagnosis for his time at school and college I considered more important than validating my concerns for myself. I had asked at the GP but they are not really concerned about adult diagnoses unless there is risk of harm to oneself or someone else. I have explained to my work that I am self diagnosed and they have accepted it, my boss said that made sense from what she knew of me, so although I would love an official diagnosis at some point, it isn’t essential at this point in my life. I haven’t really told anyone beyond my immediate family who haven’t been much interested, possibly because it’s clearly genetic in our case and they don’t see my experiences as anything but normal as it matches theirs!

My rainbow is currently on the waiting list for assessment, his struggles have been much more obvious, partly because of our greater understanding, partly because he is far more extrovert and lower masking than his siblings.

It wasn’t until I understood about autism and its wide range of effects and those in particular which affect me, was I able to look back and see how my experience of twin loss and grief sometimes differed from things I had read. These are just my experiences, every autistic person experiences things differently.

Honesty and Literal Thinking
This is a key thing in my experience, I am honest (possibly to the point of being rude I think in cases) and I also take things very literally. Small talk and hidden meanings definitely pass straight over my head, and if you hint at something, I will either not see that you are hinting at anything or I will, but I won’t understand at all. This means I have been very open about the loss of my twins, people would tell me I was brave talking about them and I didn’t understand (and still don’t) why I wouldn’t mention them. I’m more nervous now about talking about my living children to people I don’t know as I’m worried they may have hidden experiences and I will cause them distress. I also have trouble with euphemisms around the word death, my twins are most definitely dead, they’re not gone, passed away, asleep, any of that, and I could never understand why my consultant, when talking about Oscar who had already died, wouldn’t just say it, it was approached so softly softly. I went with this and I can understand how it works but it felt very weird to me. Due to the loss of each twin being so distinct I was involved with 3 separate bereavement teams and one of the midwives in particular (who was absolutely amazing, took so much care of Oscar) but I felt she was talking in code, she was always dropping hints about stuff, I’m still not sure about what. At the time, I had no idea about autism though so I just thought I was stupid after those conversations!

Masking
I am high masking, meaning a lot of my struggles are internalised and not visible. The experience of losing my twins meant that it was much harder to maintain this mask. I particularly struggled with maintaining my executive function. Previously I was always super organised, had a tidy desk at work, ran Christmas and birthdays like a military operation. After I returned to work after the death of my twins, I was unable to keep my desk clear, I had to work harder at keeping my tasks in order and I became unable to plan Christmas and birthdays to the same extent. As I did not know I was autistic back then I thought I must be going mad as it seemed like such a weird sign of grief, I hadn’t read anything about it. It wasn’t the sadness around Christmas and birthdays, the demand of doing it and organising it just wouldn’t happen, my brain just wouldn’t compute, an extremely weird feeling. This hasn’t really improved 10 years on. I still feel very disorganised compared to my previous self, my husband pushes Christmas though and often I still can’t overcome the demand of writing birthday cards.

Over Sharing
Autistic people can often either overshare or don’t speak at all, depending on the given situation. I definitely fall into this category and have to be really careful not to just blurt out the truth about my twins in the wrong situation. I am unable to recognise the social cues as to whether I should be talking about them or not. The Footprints community is really good as I know this is definitely a place where talking about them is OK and a safe space.

Autistic Need to Know Why
I also experience the autistic “need to know why”, about literally everything. This is mostly disguised in my day-to-day life, but with regards my twins it is something I still really struggle with, particularly in how they died. Oscar’s heart condition wasn’t a recognised condition, it was just a completely random fault in two separate valves, they had suggested initially he may have had Downs Syndrome, which would have given me a why, but he didn’t so there was no reason as to why it happened, the consultant said it was a 1/59,000 chance. Then Felix developing NEC at 5 days old, when he was previously considered a very healthy although premature baby with no other issues, was extremely unusual. Yes, it does happen, even at 33 weeks, but it is much more unlikely and again, there was no reason why. I am still trying to work out why, trying to see patterns in what happened.

Alexythmia
Alexithymia, a difficulty recognising and describing emotions, is very common in autistic people. This means identifying grief and the associated feelings and the stages of grief can be difficult. I do struggle with alexithymia but I was definitely able to identify sadness in this instance. Anger is my most commonly identified emotion, and frustration. I am unable to cry generally, losing the twins has been the only time in my life when I cried regularly, at least every day for months and months and months. This has now settled down, but it is still one of the few things which makes me cry. Generally, my other emotion is getting more and more angry and frustrated until I meltdown but this hasn’t ever really been triggered by grief.

Anxiety
A lot of autistic people suffer with anxiety, mainly caused by living in a world which is not designed for their needs. I have a diagnosis of General Anxiety Disorder (GAD) which I am now able to recognise as being a result of being autistic. However, losing the twins has brought extra anxiety, knowing that really unlikely events do happen, they happen to people like me, and they could just as easily happen again. I have no control over this and as an autistic PDA-er, that is almost impossible to cope with.

Equalising
Equalising is something more common in PDA autistics from what I have read. It is a way to express the distress caused by a situation where there is an unequal power balance and when being forced into an out of control situation. It is automatic and autonomic nervous system response. I can see this behaviour very clearly in my children as it results in destruction of property and verbal, if not physical violence. It is trying to make the other party understand the depth of feeling and bring them down to the same level of distress and also to retain the power balance. “You are causing me pain by forcing me into x situation, so I need to make sure you feel equal pain so you understand the distress you are causing me”. I think it is maybe to do with trying to assign blame which is a mechanism for retaining control – PDA autistics need to always be in full control. If you can assign blame, then it suggests something is not just a random accident but caused by deliberate intent and is therefore under control somehow.
I recognise this in myself a lot, although I am able to turn this inwards. I am definitely not violent nor verbally abusive. I have discovered it has often come up when passing other parents with living baby twins. I know it is not their fault but the anger I have inside about it as I want to equalise but there is nowhere for this to go. Instead, it just sits as internal rage for months, the most anyone would ever see from the outside is me glaring but even that I can’t do directly as really, underneath I know it is not anyone else’s fault, I just dash across roads to avoid these situations instead. However, it does make me feel as if there is something wrong with me and I’m just not very nice!

6 years on from discovering my identity, finding everything about myself fall into place, I am fully accepting of being autistic, I definitely haven’t found it to be a negative although seeing my children struggle can be extremely difficult, I have a lot of guilt about finding parenting them so hard when I know exactly how lucky I am to have 3 living children and how quickly it can all go wrong.