The reason my autism wasn’t diagnosed for 19 years!

The short and simple answer is: ‘Because I am a girl’, but as this is a blog post, I will elaborate on this further!

A few years ago, my Mum let me watch a video of myself as a baby. In the video I start from the age of 11 months and it finishes just before my 4th birthday. The first thing you would notice is how adorably cute I was! The second thing you would notice is my complete lack of interest in other people in the room! One scene played out as follows:

I was a toddler, able to sit up. I was sat amongst about 7 million (okay slight exaggeration!) toys, yet focussed intensely on the one I was holding; a small yellow ‘rattle’ with a spinning bow on it. As I span the bow around and around, my Grandad, who was filming, called out to me over and over again. ‘Lucy… Lucy!’ He even made silly noises but I was so absorbed in spinning the rattle that I didn’t even acknowledge him. I could see why my parents thought I was deaf! When the adverts came on our TV, I stood up, wobbled to the telly and pressed my face against the screen until they stopped! Again, no one was able to communicate with me.

The rest of the video was much the same. Me doing something, my family trying to catch my attention and failing miserably. I never held eye contact, even when my Granny got right in my face (I’ve always said her insistence on getting my attention stopped me from being more severely autistic as I grew older). If anyone picked me up, I would wriggle until I was let go. What was even more interesting is that as I aged in the video, very little changed apart from me getting visibly older and using a few more words. Even when I used words though, they seemed to either be nonsense or echoed (technical term is echolalia). The video showed a stereotypical case of autism, so why did it take so long to diagnose?

Like many girls with autism, I got taken on by one of my peers at school age. She taught me what was ‘cool’ and how to dress. I became a chameleon, naturally trying to copy my peers. It is said this ‘camouflaging’ behaviour is quite common in girls in general, and that autistic girls are also able to do this to some extent. Of course some people had concerns as I was very introverted, couldn’t write or do basic arithmetic and only had one friend (although I see having one as better than none at all!). My Mum even took me to see our doctor when I had what appeared to be a ‘panic attack’ at the age of 6. It was definitely a panic attack as I still remember that day vividly! This was back in 1995 though and the doctor not only didn’t agree that it was an anxiety attack but laughed at my Mum saying ‘Don’t be ridiculous, children don’t get anxiety!’ We now know that this isn’t true, but at the time, my Mum felt really stupid for even suggesting it and as a result tried to ignore the ever growing pile of symptoms that I was presenting. It didn’t help that my primary school had a policy of only writing the ‘good things’ on our report cards!

The trouble with being an autistic girl is that you can only hide behind the veil of ‘fitting in’ for so long before your peers realise that you are, in fact, nothing like them. By the time I was 11, I had two friends (one at school, one at home) but the majority of my peers were starting to shun me, some even picking on me. The final blow came when, aged 12, I had to go to a different school than my friends, lost my Granny to cancer and moved house within a few months of each other. I won’t go into too much detail right now as that’s worthy of it’s whole own blog, but my behaviour (at home at least) had now become a serious cause for concern. Despite this and my Mum reaching out to our doctor for help repeatedly, nothing was done until I was 14 years old and even then it was just counselling, which isn’t much good for an autistic girl who only wants to talk about rabbits!

Later that year after the counselling failed to work, I was referred to the local child and adolescent mental health service (CAMHS). I would love to tell you that this is where the positive changes began and I got my diagnosis, but that would be a lie, and I rarely lie (I never say never though!). If anything, I deteriorated further as I fell into a dark pit of mental health problems including depression, general anxiety disorder and Obsessive Compulsive Disorder. At 15 I was diagnosed with Tourette syndrome and aged 17 with OCD, but still no autism. I had also become too old for our local CAMHS, but was still too young for the adult mental health service! After what felt like an eternity, I was referred to the adult service.

My psychiatrist basically said that ‘Girls do not get autism’ and that I didn’t have autism ‘because I cried when my Granny died’. He decided that I had a personality disorder instead but not which one! (I have come across a lot of girls later diagnosed as autistic who were given a personality disorder diagnosis earlier in life) It was a long battle to convince him to refer me to someone who had an autism qualification beyond reading the points in the DSM IV but eventually I went to London where I was diagnosed with autism. I was 19 years old!

Since my diagnosis, I have learnt a lot about autism and can look back and see that I was actually quite moderately affected by it. This was later confirmed by another specialist who explained that, while my writing and verbal skills are shockingly good, the majority of my skills are below average and I have been diagnosed with learning difficulties as a result. Again, this often seems to be the way with girls on the spectrum (the skilled vocal/writing not the LD!). I have been placed in that grey area of the spectrum that is neither high functioning (Aspergers) or low functioning.

A lot of people question how someone with such obvious difficulties can go unrecognised for so many years. In my opinion, it is because awareness of how autism presents in females has not been researched enough and as a result, doctors are looking for more male traits in us, not finding them, then writing it off as a mental health ‘thing’. That is why I am spending ‘Autism awareness month’ raising awareness about being a female on the Autistic spectrum. Although it has taken many years to get female autism recognised as a real ‘thing’, it is starting to be recognised by more and more people (There are also several good books on the subject!). A lot of people still don’t realise that females can be autistic as well, which is why raising awareness of autism in girls is so important to me.

little me 2 copy.jpg
Me aged 3 sitting on a train platform. My smile masks my anxiety, although you can see if you look closely enough! 

 

 

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