I was finally diagnosed with autism at age 19 in 2016, thanks to the many wonderful and generous strangers who helped share and contribute to my gofundme page (I explain why I needed this further on in this post). I am eternally grateful to these people- with their help I have gradually learned to love myself, take care of myself somewhat efficiently, and have started to become the person I never thought I could be.
Growing up, I was misdiagnosed over and over with a number of mental health disorders among many other things. I spent my entire childhood + adolescence in and out of hospitals, doctors’ offices, A&E, therapy and counselling. I underwent multitudes of therapy that I was unresponsive to, MRI scans (x1000), prodding and probing to no end, and even eventually had an injection in my brain- for a rare migraine disorder that I possibly didn’t have. Throughout all of these diagnosis’ I was aware that none of them seemed to quite explain what I was experiencing, but I was never taken seriously or actually listened to by doctors/therapists. (Because I have been asked several times)-The things I was misdiagnosed with include: severe OCD, severe depression, severe generalised anxiety disorder and sporadic hemiplegic migraines (my doctors/therapists would consistently put emphasis on the “severity” of my issues and so that’s why I noted it). I was consistently and relentlessly dismissed with half-assed assessments and medication that I not only didn’t want but also felt didn’t help at all (honestly i believe they likely made me much much worse).
Growing up as an undiagnosed autistic was obviously extremely hard. I won’t talk about this much, but it led to years of not knowing who i was, why i was the way that i was, and a whole lot of self loathing. Eating has been a constant struggle, which my family were not always kind about (although they are now entirely supportive), and my sensory sensitivities have always been prominent and debilitating. I was bullied in primary school, began self harming in high school, and attempted suicide more than once between the ages of 13-17. I can’t really emphasis just how difficult my childhood was. Please do not ask any further questions about this. I am now in a much better place mentally.
I began reading online about autism and sensory processing disorder in early 2015, after a counsellor made an offhand comment. I attempted numerous times to reach out to my local GP who eventually referred me, and then re-referred me to my local adult psychiatry + adolescent mental health services, who once again did not take me seriously. I eventually spoke to a different professional who understood and validated what I had to say, and then referred me to see a “specialist.” I later, after months of waiting, received a letter telling me that the centre I had been referred to did not have a specialist appropriate to asses my needs, and that I had been discharged. I then had to begin the whole referral process again. This happened several times, all with no outcome what-so-ever. I never saw any specialist. During this time I moved to Cambridge to begin university.
With having spent so long fighting through the NHS and receiving (quite literally) nothing, I started exploring into going private. I decided to take this step not only for my own sake, but because I knew that I would not be able to afford rent in Cambridge without financial help. As a disabled student who cannot work (due to my disability) I was able to apply for a Disabled Students Grant, but needed formal diagnosis papers to do so). After extensive research, I found a group called Clinical Partners. I emailed them and promptly received a phone call from a doctor, willing to discuss my situation. The doctor listened attentively to my explanations, and agreed that autism sounded extremely likely. The doctor I spoke to that day was the same doctor who later did my assessment and diagnosed me. All in all it cost £1700. I would once again like to reiterate my gratitude towards those who donated and helped me get to where i am today.
You may be thinking “how can you go nearly 19 years without anyone realising that you’re autistic?” When you’re growing up, especially as a girl, you learn to conceal a lot of what makes you different and what makes you stand out. Paired with my misdiagnosis’ and quiet personality, I didn’t talk much about anything to anyone. As I aged, and advanced through the education system, I had to start taking on more responsibilities and more stress in my day to day life. I also had to deal with growing troubles in my immediate family, bullying and the general (but valid) teen angst of “who am i?” and “whats the point?” and “why is everything so damn hard!?.” As the stress and confusion and anger built, my autistic traits started to become more pronounced not only to myself, but to those close to me. My family, friends and boyfriend (gradually) supported me through my realisation and diagnostic process, and continue to support me now.
I am now near the end of the first semester in my second year of university. I applied for DSA (disabled students allowance), filled out booklets, went to appointments and assesements aplenty, and was deemed eligible. I then found out that DSA does not work the way that I had thought. I am unsure if it was a misunderstanding on my half, or a bad explanation on the professional end, but I imagine it was likely a combination of both. I did not receive any money personally. I received a grant that paid for educational services that aid me in my studies- I have some software on my laptop that helps me read and save information easier, and I have a disability advisor, who I meet with once a week. When applying for my diagnosis, and when setting up my gofundme page, I did not realise that the help I had hoped to apply for, was not the help that I would receive.
However, I do not regret paying for a diagnosis. Sure, I may now be applying for an NHS diagnosis, a year later, to be able to have access to an occupational therapist (to assess and advise me on sensory issues), an autism-trained counsellor/therapist (for unresolved issues with grief) + other autism resources, but the relief I experienced when receiving my private diagnosis earlier this year was and still is inexplainable. Finally knowing that I was autistic after eighteen years of self-doubt, personal torment, bullying, misdiagnosis’ etc was incredible. If I remember correctly, I came home and I cried. A lot. I don’t think I will ever stop being grateful to those who donated (as previously stated). I often feel overwhelmed by the profound gratitude that I feel towards the mostly anonymous people who likely saved my life, or at least vastly improved the quality of.
Without the money that I thought I would be receiving, I am struggling a bit this year. I budget carefully the money that I receive from loans and that my family try to contribute, but i go to university in Cambridge which is very expensive. I am struggling with the emotional and physical burden of being an autistic student, remaining mostly unsupported and pretty damn isolated.
And yet I feel strangely content. I flap my hands and rock back and forth, I cosy up under my weighted blanket and watch my lamp project soothing glowy patterns onto my ceiling, and I am content. I feel as though happy is a big word to live up to, especially with the issues i’ve had in the past, and the issues that carry through into my present. I spend a lot of time sobbing and shaking uncontrollably while trying to force myself through university, through remembering to cook my dinners, to do my laundry, to adult responsibly and safely. I squeeze my shoulders tight to avoid knocking my angry, exhausted fists against my head in unexpected meltdowns, brought about by the daily overload that is my life. But somehow I am calm. I am mostly peaceful inside, finally knowing who I am, what I am, why I am. And I am grateful. With a new rekindled hope for existing, I am grateful to have only suffered the unknown for 18 years. 18 years compared to the average 80-90 is barely anything. A small but painful blip in the beginning of my adventures. And all in all, I believe I have grown a better and stronger person for all that I went through.
Thanks for reading.
“I think I might have autism and I want to talk to my parents and/or a doctor about it, what do I do?” Okay- my advice is always the same: read through this simplified diagnostic criteria (link). Make a list talking about how each aspect effects you day-to-day. Use this as an aid when confronting people you’re worried about telling- this way you have a well thought out + researched “claim.” You are then more likely to be taken seriously as it won’t look as though you’re misinformed or pulling this idea out of nowhere (most adults (parents/guardians + healthcare professionals alike) are quick to dismiss people due to their misconceptions/assumptions on autism and how it presents itself). Please stay strong and resilient. Don’t take no for an answer. Also remember that self-diagnosis is 100% valid. Your autism is valid, no matter how it presents itself. Even if you never get a diagnosis and/or never tell anyone. Some people are content just knowing that they’re autistic, and don’t feel the need to pursue an “official” diagnosis. Some people get a diagnosis for access to resources and some people get a diagnosis for the validation. People get diagnosed “officially” for a number of reasons, but not having a diagnosis does not make you any less valid or any less autistic.
What are your special interests?
>Spooky things: halloween memorabilia, horror movies + tv shows (more ghosts than gore), horror stories, ghost stories, unsolved worldwide mysteries (e.g. slender man), folktales, liminal spaces. Sub-categories/interests: old architecture (victorian, gothic), the victorian era (in general), gothic literature, edgar allan poe(<3), the autumnal months (i thrive), statues, old weird paintings filled with layers and layers of subtext and symbolism, castles & palaces, stately homes, abandoned buildings, bats, graveyards, black birds and much much more.
>Hot drinks: I really only drink hot drinks aside from water. the cups are hot and tingly between my hands + emit a nice pressure. I have recipes. You’re allowed to ask me about recipes.
>Soft things: minky blankets, leggings, soft toys. 90% cotton long sleeved tshirts, sweaters. I’m weak. I buy them all. Soft things make me feel so content.
>Sherlock Holmes: I do not like Benedict Cumberbatch. He has said some truly horrible things about autistic people. I still watch the BBC series for the relatable content and thrills. I have been reading the Sherlock Holmes books and loving the character since I was 6 years old (I headcanon Sherlock himself to be autistic).
>Stationery + Organisation: planners, pens, stickers, pretty notebooks (<3), organising things neatly, putting things in boxes, squares. Lining up all my objects to fit in and around each other. Jammin’ on my planner 24/7.
>Illuminated Manuscripts: (pretty self explanatory)(very very keen in Book(s) of Hours
>Photography: I take little photos everyday that I refer to super affectionately as my “squares” I keep them on this blog (link)
>Collecting Found Things: Mostly scraps of paper- poems in abandoned wallets, shopping lists, notes left in charity-shop cookbooks, etc. I have a little notebook where I stick them all.
I recently wrote a blog post with the National Autistic Society which you can find here: http://www.autism.org.uk/get-involved/tmi/stories/meg.aspx