I Was A Lost Girl – A personal insight into late diagnosis of Autism.

Most good stories start with “once upon a time”. Once upon a time; not so very long ago it was thought women and girls could not be autistic.

Now I know this may well make you want to switch off, but the reason women were missed for so long was because of gender. Early autism researched was focused on men, without the realisation that women present symptoms of autism differently; this notion leads to women being under-diagnosed. The stigma that women don’t have autism is not only believed by the general public, but some clinicians still also believe this.  Most women, therefore are still not diagnosed – and if they are diagnosed, it occurs late in adulthood. The psychological and treatment benefits of a professional diagnosis often outweigh the disadvantages; many women with autism wish they were diagnosed earlier.

Clinicians and researchers have also come to realise that many “higher functioning” autistic girls are simply missed. They’ve been termed the “lost girls” or “hiding in plain sight” because they’re overlooked or diagnosed late. They don’t fit the stereotypes or their symptoms are misinterpreted as something else. And they may be better at hiding the signs, at least when they’re young.

I know that I spent the majority of my life feeling lost in plain sight. I think back to things I used to do in my childhood that were actively suppressed. I used to move furniture in my home, my parents friends homes, even my doctors surgery back to how it was the last time I visited. Even now, ‘you have changed your hair’ etc will be my first greeting to someone.  I was obsessed with horses and my little pony, but unlike a boys love of trains this was encouraged. There does seem to be a gender bias to encourage girls to be completely immersed in their special interests without thinking there might be something “wrong” with them, and I think that’s something that helps us stay hidden.

I went the majority of my life not knowing why I’m so different, never fit in, found making friends so exhausting, had difficulties with every social interaction, and had “unusual” sensory issues no one else seemed to have.

For a long time I knew my father was autistic (he has never been diagnosed). He ticks every box. It was a rude awakening when I was told a friends daughter was autistic. I would council her exasperated mother not to worry because “she was just like me” at that age. I was one of a very select few this girl would talk to as I was able to remember everything about my little pony, she didn’t even talk to her own school friends at her own birthday party and did a puzzle instead.  From then; time on the clock began to tick, I just didn’t know it yet. Soon I wouldn’t be able to hide in plain sight any more.

The more I learnt through my friends daughters diagnosis the more I suspected. Eat and drink the same things all the time, check. Only wear soft clothes, check. Get tearful if my routine is interrupted, check. Have a special interest (no longer ponies) check. Be overly emotional, check. In general I was always the conciliatory one, the one always looking to make sure everyone else was happy. Perhaps it was another way of hiding.

Then my physical and mental health took a battering, by several things over a number of years. Grief, operations, and finally deep depression followed. If anyone ever wanted to be nasty to me they seemed to focus on the same insult to throw at me “you aren’t who you say you are”. This would always knock me for six. Even then I knew who I was; I just couldn’t feel safe in the certainty of it. After everything I wasn’t always sure I was who I thought I was, I wanted to be certain I wasn’t who these people told me I was. However I genuinely started to question what was wrong with me? Why did this keep happening?

Rarely have I understood that people don’t say what they mean or mean what they say. I do. I now know meaning what you say, and saying what you mean is actually somewhat unusual.  But I have come to learn that because of my camouflaging, because my brain is ALWAYS thinking and therefore my face is often “blank”. I am just unreadable to those who’s brains don’t work like mine.

When I was diagnosed in 2018, I had to fight for it. Various diagnoses of depression have been flirted with my entire life, I never felt the medication my GP provided me helped. And neither did counselling, they would approach me with the view I was expecting the worst to happen unnecessarily and were gob smacked when it happened. I’ve since learnt we can view our brains as prediction machines, we are always assessing risk and looking for what might happen, for some autistics that ability can almost be savant.

When I finally went to the GP in 2018 clutching the information on autism in women I’d printed off the doctor I saw was a trainee and rubbished my concerns. Thankfully armed with said information I told him I wasn’t going to take no for an answer. Four weeks later I had an initial appointment with a nurse practitioner. She was keen to diagnose OCD. In fact she was keen to put me forward for anything BUT an autism assessment. Perhaps it’s because when she finally agreed to refer me – I found it would be a two to four year wait.

At this point I called Benenden and found one of the three doctors on their books able to provide an autism diagnosis was a one and a half hours drive and so I made an appointment.

It took several appointments to be diagnosed. He also changed my antidepressants. I thought both these things would finally help. I was so physically and mentally exhausted I was struggling at work like never before. I would see this doctor regularly for a year. He was the first doctor to ever say I had the right to be happy, I wasn’t wrong, I was just different. I am running an iOS when the majority operate in Windows.

However like most things they got worse before they got better. All my physical and mental diagnoses were questioned. I was even told the management view was that Benenden just wrote what I wanted them to. Any form of routine I tried to introduce for myself was put to one side. I had been so long without routine after it was hammered out of me in childhood and adolescence that I craved it.  It was a long battle, but I didn’t quit, where needed I obtained supporting evidence from my consultants and I fought for time to attend new counselling sessions which were sensitive to my autism.

Slowly I remembered who I was, and I rebuilt a firm foundation on which to stand. I wouldn’t say I am all the way there yet…but I’m no longer lost. I am found.