“Greta, my girl on the Spectrum” was originally published on Facebook and has been reproduced with permission here.

My “Girl On the Spectrum”

– Clara Benn –

My eldest daughter of two, Greta, finally received her ASD (Autistic Spectrum Disorder – horrible term) diagnosis just under a year ago, after a predictable years-long process of battling to get her assessed. She is 12 years old (11 when diagnosed – I know, we’re very lucky compared to many).

This is the story of how we got to that point. Diagnosis. Obviously, Greta’s story doesn’t end with diagnosis, but this one does. Greta is what they call “gifted and talented”. She is exceptionally gifted in a huge number of ways, which is one of the reasons her difficulties went unaddressed for so long. (“Well, of course, she doesn’t connect with any of the other kids, she is at least two years ahead of them in every way!”). And for a long time, I didn’t see it either. None of the other five-year-olds supported their arguments with Dickens quotes (for the record I did not make (or even suggest) my 5-year-old read Dickens. I have never been able to MAKE her do anything.) She was (and is) extraordinary in every sense. And although I worried that being quite so extra-ordinary might not be easy in the long-run, she was happy. And as long as she was happy, that was everything.

When getting it right is getting it wrong

Around aged 8 my little girl – the happiest, most positive and astonishing little girl – stopped being happy.She was starting to get into trouble. She was being told she was rude. She didn’t want to be rude and didn’t know how to fix it when people told her she was. People were telling her to do things that made NO SENSE and refusing to have a 30min debate about it in order to get to the bottom of whether or not it did actually make sense. You can’t just give in and do something that makes no sense – right? RIGHT? Things would happen around her that were unfair or unjust. And it is important to FIGHT FOR JUSTICE and FAIRNESS and TRUTH and EQUALITY and make sure that EVERYONE IS FOLLOWING ALL THE RULES… and what does being eight have to do with it? Why can’t an 8-year-old tell off their teacher? Or random adults on the street? How can we all just move on from a minor incident between two (other) children, when I have seen that the outcome was NOT FAIR??? And all this time Greta was still trying to be a perfect and good girl and make everyone happy and get everything right… but it was not working anymore.

Becoming too much

And the more unhappy she became, the more those things that had just been irritating realities of life were overwhelming: bright lights which hurt, noises everywhere – like the chattering voices in a classroom each of which her brain gives equal importance to as the teacher’s – , people touching you – (why do people touch each other all the time although it hurts?). She didn’t explain this. She couldn’t. After all, isn’t it the same for everyone? Other people must just be better at putting up with the world. Greta began to assume she must just be bad. She kept trying to be good and get things right when she had the mental energy to do it. But she was very sad. In fact, she quite often thought it would just be so much nicer and easier to be dead because it sure didn’t look to her as if things were ever likely to get any easier otherwise. And the more overwhelming the world became, the less easy it was to put up with other people’s RIDICULOUS BULLSHIT. I mean – FOR FUCK SAKE, WHY DO I HAVE TO LOOK AT YOU TO HEAR WHAT YOU ARE SAYING? DO I HEAR WITH MY EYES? Do I not have enough to deal with in this noisy, bright, harsh, painful place with pointless rules that make no sense where injustice and unfairness reign and my opinions are not equal to those who happen to have been born before me?

All in the head?

And this is how Greta started to get angry. And when Greta started to get angry, people around her started getting angrier too. They would say things like: “I know you can do better than this, you used to be fine.”

“You are just lazy and selfish,” (parent of another child towards the end of a school day-trip, because she was too exhausted to keep up on the long walk home).

The general consensus was becoming, “Your behaviour is unacceptable. YOU are unacceptable.” Greta started having a lot of headaches and tummy aches. Sometimes she would throw-up for no real reason anyone could work out. Lots of people did not believe her that she was actually feeling ill. Was she just pretending to feel ill to get out of doing stuff she didn’t want to?

Her “symptoms” certainly seemed to get worse if you told her to do anything she didn’t want to. Greta didn’t know either. She knew she really didn’t feel well. Her symptoms did seem to get worse when she was asked to do something she couldn’t face. Did this mean it was all in her head? Was she mad? Or just bad? She already knew she was bad. Now, I would like to point out at this stage that everyone around Greta was doing their best and this includes the school and all the other wonderful people in our family. This is not the story of a child that was being neglected, or to whom people weren’t paying attention. It is not possible not to pay attention to Greta.

One-woman Justice League

I was worried. I didn’t know what to do or how to help her. The school was worried. She wasn’t being a “problem child” in the sense that she was never violent, she didn’t bully her peers – quite the opposite, she was a one-woman justice league – but she didn’t always get it right and receiving her “help” was in no way contingent on actually wanting it. And she could be a pain in the arse. She wouldn’t shut up. Dominated discussions. Could be very defiant. Would corner people and talk on and on about her latest interest/obsession without letting them get a word in. But, she was still top of the class in – pretty much everything. If anything she was revealing ever more astonishing talents. And she was very funny and kind and weirdly self-deprecating and insightful about her own shortcomings, without any apparent ability to change them. Most adults loved her. A few didn’t get her and didn’t like her. They thought she was being manipulative, faking illness or upset to get her own way all the time. She was a precocious, arrogant, little upstart, who thought she knew better than the grown-ups and would not just shut up and do what she was told. And they could see that people around her were pandering to her – she had them wrapped around her devious little fingers. She needed putting in her place. No adult ever admitted to not liking Greta. But Greta knew. You can feel it when an adult doesn’t like you, even when they are pretending to be nice. Even when you are autistic. She began wondering if maybe the other adults were just better at pretending. Probably. She was bad, after all. The other kids were certainly being nice and clear about how weird and annoying they thought she was.

Freak of the bad sort

Greta was now clinically depressed. She hated school, which she had loved so much before. She definitely wanted to die. Not only was life impossible, but she was clearly a freak of the bad sort and causing inconvenience and worry to all who had to tolerate her. It would be better for everyone if she were dead. She did not tell anyone. Why add to their worries? She wrote a suicide note though, just in case. The school offered Greta one-to-one counseling sessions. These are precious, they have a limited number of hours for the whole school. There were kids with much worse problems than Greta. Kids who seriously hurt themselves or others. Kids from families with serious “problems”, but they gave Greta the maximum allocation they could offer one child: 8 one-hour sessions, I think (told you they are a nice school). She’d lost all her sparkle and enthusiasm. Everyone was worried. Greta LOVED the therapy sessions she was offered. It didn’t really change anything but she finally had an opportunity to vent. Things were a little better just for that and for the hope that maybe someone might be able to help.

Could Greta be…?

Obviously, as her mother, I was frantically looking for ways of helping her myself. One day, quite by chance, I read something about autism in girls. Now, I was obviously aware of autism. I had seen Rain Man. I had seen documentaries about men who can draw accurate cityscapes from memory and non-verbal little boys who bang their heads against the floor.

None of this had anything to do with Greta, the most eloquently verbal child in any room. Seemingly outgoing. Seemingly confident. Definitely very caring. Autistic people have no empathy, right? In fact, I had once or twice thought how awful it must be to have an autistic child who cannot care about you or connect with you. I felt very lucky that that was not me. I knew women could be autistic, but that it was almost vanishingly rare, yes? I’d certainly met lots of autistic little boys, but never a girl. So, nothing to do with my children. Then, because I am casually interested in such things, I read the article about a woman with high-functioning autism and the presentation of autism in girls, and to my amazement, they were talking about Greta. How had I missed it? Could Greta be “a bit autistic”? Funnily enough, Greta’s counselor had reached pretty much the same conclusion around the same time as me, which she brought up very gingerly, clearly expecting to be met with scorn, alarm, and resistance.

Jumping through hoops

It took us two and a half years and more jumping-though-hoops, strongly-worded-letters, circumvention, and standing-our-ground than I care to mention until we finally had Greta in front of a very skeptical and serious NHS psychiatrist specializing in autism diagnosis. “Do not expect a diagnosis Ms. Benn,” he said to me sternly, as if he thought it was a bit of a cheek that I had actually turned up for an appointment I had fought for over two years to get. “Your daughter may have some autistic traits, but that does not mean she will qualify for a diagnosis of autism. The criteria are very strict. The diagnostic process is extremely rigorous. You will not be given a diagnosis until several weeks from today, as we will have to analyze the results of today’s tests.” There followed three hours during which I was quizzed in depth on every aspect of Greta’s existence and filled out seemingly endless scale-questionnaires. Greta was taken into a separate room, where she was interviewed and tested to within an inch of the assistant psychiatrist’s life. We were then left to our own devices for half an hour while the two psychs compared notes. “Ms. Benn, we have discussed Greta’s results and I am actually able to tell you right now that she will be receiving a diagnosis of Autism. We have no doubts. Your daughter is a very charming and exceptional young lady. It has been a pleasure meeting her and you can await our full report in a few weeks time.” And that was that. Actually, he gave me a leaflet, then that was that. In the year since Greta’s diagnosis, I have learned so much. Not least, the ridiculousness of using the phrase “a bit autistic”

Addendum:

If you would like to listen to the songs Greta has written and recorded, she has a Soundcloud page. Each song is written entirely by a Greta and they are all very different. You can also find Greta and her dad, musician-comedian Mitch Benn, on YouTube. Resources and further reading: Clara can’t remember which article first welcomed her into the world of autism, but she says, one of the biggest influences on her thinking was The Curly Hair Project. Aspergirls by Rudy Simone This book comes highly recommended by the female autistic community.

Thank You

Bee Kids would like to thank Clara Benn for giving permission to share her words with you. This post was originally published on Facebook and since chatting with Clara earlier today it has been picked up and shared by Neil Gaiman. Greta and Clara are on a mission to boost awareness and acceptance of autism, particularly for autistic girls who often fly under the radar, missing out on critical support.

Please show your support by liking and sharing this post and adding your comments below.

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