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Hannah Cass: Life changing diagnosis

This week is Autism Awareness Week and we wanted to contribute to it with the fantastic, inspiring story of Hannah Cass. Hannah was late diagnosed with autism and it completely changed her life for the better. Today, Hannah is also an Autistica ambassador and helps others through her experience.

 

Life changing diagnosis

It’s funny because I can remember the exact moment that I snapped and the chain of events in getting a diagnosis began. My husband was brushing his teeth. I had a screaming baby…maybe 9 months old? The dates get muddled but I remember the feeling so clearly. I looked in the mirror. I was a mess. My hair was falling out, I was still anaemic from a huge hemorrhage during delivery, I wasn’t sleeping and barely eating. And yet on the outside to the rest of the world I was absolutely together.

And that was the moment. My husband took the baby and I just wandered in to my bedroom and started crying hysterically. Huge, heaving sobs that were uncontrollable. I hadn’t told anyone about the suicidal thoughts. That I had looked up adopting my son or leaving him somewhere safe and running away. But in a roundabout way, it was that moment that changed my life for the better.

My first recorded issue with behaviour was when I was 4. I kept running away from school. Back then, it was quite easy to slip out of school and run round the block to my house. I was physically sick every single morning. I struggled to sleep and eat. I had severe eczema that I would claw at 24/7. Its in my doctors notes – ‘behaviour problems at school’. I was terrified of everyone. The staff, the other children, the dinner ladies. Even the lady who came in to do music lessons, who was the gentlest soul on earth, terrified me because she had frizzy hair.

I had started school almost the moment I turned 4 because I was very bright. At my pre-school health check, I read the posters on the wall aloud to an astonished health visitor. I had always been able to read and can’t remember ever trying to learn. I wasn’t taught by my parents or coached. It was just always there. I was at my happiest buried in a book. There is a beautiful line in ‘Matilda’ by Roald Dahl that says,

 

“So Matilda’s strong young mind continued to grow, nurtured by the voices of all those authors who had sent their books out into the world like ships on the sea. These books gave Matilda a hopeful and comforting message: You are not alone.”

I was very much that child. I just didn’t really take to other children. I would hide at pre-school because the other children would run and play loudly and it made me feel disorientated. I didn’t like the playground at school for the same reason. I was moved out of the school I kept running away from because I had become so fearful of the headteacher (who enjoyed shouting) that I refused to attend.

I went on to a beautiful, tiny village school in an old Victorian building and loved the staff and curriculum. But I still couldn’t build the relationships and friendships that everyone else seemed to have. I would get invited to the odd party but didn’t like being left with strange parents in environments that didn’t look or smell like mine. I developed a close friendship in the end with another bright yet introverted girl just like me, however we lost touch in adulthood. By my late twenties, I was still having transient friendships and any that were even remotely stable, I was avoiding. I would cancel plans at the last moment because of overwhelming anxiety. I would practice conversation starters and write lists of topics to chat about with each person because I found organic conversation so puzzling. I drank a lot socially before my pregnancy but now I didn’t have that to lean on for a bit of a confidence boost.

 

I went to the GP and had a cry and said that I believed I was depressed. I had postnatal depression anyway but this felt so much deeper and long standing. I had my medication doubled and was given information about online cognitive behavioural therapy. I think by this point however, what came next was inevitable.

In an effort to get me to sleep, I was given some medication to try. For some reason, either that or my mental state caused hallucinations and I ended up at A&E. I was not treated well – the on call crisis team took 3 hours to arrive, a call was made to social services (my son was with my parents) and they refused to let my husband come in for my hour long psychiatric assessment. I was barely able to speak. This kept happening. I had been a teacher for 8 years prior to having my son and at weekends, I would barely be able to say two words together or leave the house. I would cry and sleep and work and just cycle this strange behaviour. Monday to Friday, I was in a highly stressful leadership role. At the weekends, I could barely feed myself.

 

Behind the scenes, my husband and mum were increasingly concerned. I flinched if anyone tried to touch the baby. I wouldn’t let people touch things in my house and I was exhibiting paranoid behaviour. The constant stream of visitors was almost physically painful to go through. My mum happens to be a specialist teaching assistant that supports the SENCO in a large primary school. She helps apply for care plans, organise interventions and supports parents. Somewhere in a folder, she found a document and bought it home with the title covered and asked me to highlight things that applied to me. I basically coloured in the whole sheet. The title? Autsitic traits in Women. A light suddenly switched on…struggles socially, shut downs, meltdowns, highly anxious, masks, and on and on it went. After some discussion, we went to the GP and showed him the sheet as well as some other research we had done and I was put on the waiting list for a diagnosis. I was very lucky to get a cancellation and was officially diagnosed in March 2015 with Autistic Spectrum Disorder.

 

The appointment itself and the subsequent report is tough because it’s a long list of things you struggle with. That you can’t manage and that makes you unhappy. But strangely, that piece of paper was also the first time in my life that I really knew who I was. Why I was like I am and that it was ok. From that point, I really began to start almost forgiving myself and piecing together my days growing up. I remember that I was picked on relentlessly for enjoying learning. I realised, for the first time, that it wasn’t my fault. A teacher at grammar school,  who I tried to turn to when being bullied for this and other reasons said to me that if I just joined in more or had a thicker skin or relaxed a bit, maybe they would stop. But looking back, I was in a constant survival mode in post 11 education. Constantly changing rooms and teachers, having to remember books and homework. And on top of that, going to a high pressure, top girls grammar school where perfection was demanded. I finally understood the complete lack of capacity to understand everyone’s preoccupation with acquiring Adidas trainers, but knowing every word of every Buffy The Vampire Slayer episode and all about the characters and the actors who played them.

 

With my family’s support, we had a care assessment done and our fantastic local autism services via social care laid out a package of support that they gave my mum special permission to provide herself as strangers in the house isn’t possible. I have a care plan with simple tasks to achieve. One of the things highlighted is that my executive functioning skills are pretty non-existent – hence I can’t initiate tasks or move from step to step easily. But it means that these days, I have clean clothes and can see (most of!) the floor in my bedroom. My kitchen and bathroom are clean. We try to find ways of reducing steps or processes so we have steam cleaners which do a variety of jobs all in one with no smelly chemicals. We order food and I am trying to learn a few simple meals by heart using some adapted instructions.

 

I left teaching which was a huge wrench as it was all I had ever wanted to do and I was good at my job. However there were difficult circumstances involving being refused permission to work part time and it would mean working simply to pay for childcare. I was also suddenly aware that my weekend shutdowns were likely caused by the enormous effort of being ‘normal’ during the working week. I applied for PIP and after some battling, got a small amount each month to help with the bills.

 

We invested in 12 hours of childcare at a nursery each week to give me some respite. Unfortunately, disabled parents are not entitled to any childcare subsidies (I have other medical conditions that require appointments and rest) so we had to pay a huge amount for this even with the government childcare scheme. I would say it took 2 years to learn who I was again. I went back to the start and began pulling memories together and putting them in an ‘autism context’. I could see the links throughout my life like pieces of a map being sellotaped together so that you can finally see the route. I saw how my childhood directly affected my adulthood. I read blogs, books, social media feeds and anything else I could find about other peoples experiences and research. I even took part in studies myself as a subject at a local university for PhD students. I began sharing my experiences with the retro gaming community that I am a part of online. I started finding other people like me and we would share our funny ways and share tips on managing difficult situations. I’ve become an ambassador for Autistica and use gaming to facilitate conversations about autism and mental health and share my experiences. I know at least 2 people who are on the autism diagnostic pathway now as a result of advocacy and conversations with various autistic adults; especially late diagnosed ones.

 

So what have I really taken away from my diagnosis? Well, I was diagnosed aged 30 which was far too late to mitigate the damage done, but it has allowed for some retrospective healing and letting go. Had I been diagnosed when my problems started at 4years old, I would probably have had more support for making my way in the world throughout my education. But back in the late 80’s, autism was a new-ish concept that only existed in boys, who hit their heads on walls and were often institutionalised. I was labelled as shy, miserable, sullen, a loner and a ‘boffin’. I wish in some ways I could travel back in time and hug that young, confused girl so much. I am so pleased that there is more of an understanding now that girls and women have a unique presentation, particularly socially and emotionally that isn’t always catered for in the diagnostic process. To me, we need to be supporting diagnosticians to see the whole child/adult and not just a score on paper. I have heard stories of decisions being made on just an ADOS assessment tool and nothing else, including a case history. Young people are still slipping through the cracks.

 

But my diagnosis has given me an enormous sense of purpose. I’m not so hard on myself any more. I’ve embraced my “inner weird” and I let it out now so that I am my genuine self. It hasn’t been very easy and I’ve lost people along the way. But I think that’s something I will probably always find, given that my ability to sustain friendships is so limited. People tend not to stick around after about the 7-10 year mark because I don’t seem to be able to give back what they are able to put in. I try my hardest but with an understanding that I am who I am.

With the support of a mentor (who is also autistic and has made the 5 year mark so far…doing well!) I set up my own business at the end of 2016 and now use my love of gaming to hand make licensed character plush toys from retro game franchises. I also paint and draw pictures of animals. I stream games and crafts online and use that platform to fundraise and advocate. I’m busy and happy – and I can do all of these things within the complexities of my fluctuating needs.

 

If I could give you one thing to take away from this piece, it’s that there is hope after your diagnosis and it doesn’t spell the end for you as an individual. The diagnostician didn’t even have a leaflet to give me after my appointment or any signposting for resources. It’s a kick in the head at first, but you develop such an understanding and awareness that the rewards are immense. You make peace with your past and your present and make adjusted plans for your future. You realise that it’s ok to be that person you have been squashing down into a little locked box all your life for fear of ridicule. A diagnosis gave me permission, in my own mind, to be myself for the first time. There is nothing more liberating than finally living your truth.

 

Autistica is the UK’s autism research charity. they exist to give every autistic person the chance of a long, happy, healthy life.