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Why It Took 19 Years for Me to Be Diagnosed With Autism

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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 mom 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 fourth birthday. The first thing you would notice is how adorable I was! The second thing you might 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 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 grandfather, 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. When the ads came on our TV, I stood up, wobbled to the television 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 grandmother got right in my face. 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 seemed to show many traits associated with autism, so why did it take so long to diagnose?

I got taken on by one of my peers at school. 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” behavior 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. My mom even took me to see our doctor when I had what appeared to be a “panic attack” at the age of 6. This was back in 1995 though, and the doctor not only didn’t agree that it was an anxiety attack but laughed at my mom saying, “Don’t be ridiculous, children don’t get anxiety!” We now know that this isn’t true, but at the time, my mom felt silly for even suggesting it and as a result tried to ignore the ever-growing pile of other signs 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. I’ve found you can only hide behind the veil of “fitting in” for so long before your peers realize 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 grandmother to cancer and moved within a few months of each other. I won’t go into too much detail right now, but my behavior had now become a serious cause for concern. Despite this and my mom reaching out to our doctor for help repeatedly, nothing was done until I was 14 years old, and even then it was just counseling, which wasn’t very effective for an autistic girl who only wanted to talk about rabbits.

Later that year, after the counseling failed to work, I was referred to the local Child and Adolescent Mental Health Services (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. 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 at age 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 learned a lot about autism and can look back and see how I was affected by it. Another specialist 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. I have been placed in that grey area of the spectrum. A lot of people question how someone with such difficulties can go unrecognized 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 may be looking for more male-associated 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 recognized, it is starting to be recognized by more and more people. There are also several good books on the subject! A lot of people still may not realize that females can be autistic as well, which is why raising awareness of autism in girls is so important to me.

a young girl in a pink outfit sitting on a bridge
Lucy as a young girl.

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Originally published: April 8, 2016
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