My Autism Diagnosis Story ✿ 

CW FOR SELF HARM + SUICIDE MENTIONS 

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 finally start to grow again as an individual. And now, somehow (and much to my delight), I have been helping others do the same.

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 Cognitive Behavioural Therapy that I was unresponsive to, too many MRI scans to count, prodding and probing to no end, and even eventually had an injection in the nerves in the back of my head- 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 was never taken seriously or listened to openly by doctors/therapists/counsellors/psychiatrists. I was consistently and relentlessly dismissed with half-assed assessments and pushed towards taking medication that I not only didn’t want but also felt didn’t help (honestly I believe most of them likely made me much much worse).

Growing up as an undiagnosed autistic was obviously extremely hard. I won’t talk about it much, but it led to years of not knowing who I was, why I was the way that I was, why (literally) everything was always so suffocatingly hard, and eventually, a whole lot of self loathing. Eating has always been a constant uphill struggle (which people tended to be very cruel about) 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 between the ages of 13-17. I can’t really emphasise just how difficult my childhood was as a result of not realising that my entire existence functioned differently to those around me. I am now in an enormously 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 for an appointment to appear, 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 as a result. 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 or progressed past this point. During this time I moved to Cambridge to begin university.

Having spent so long fighting through the NHS and receiving (quite literally) nothing, I started researching 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, as I genuinely don't who I would be or even where I would be without them.

As a side-note: 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’ , quiet personality and tendency to turn any struggles inwards, 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, confusion, anger and bewilderment at existence built, my autistic traits started to become more pronounced not only to myself, but to those close to me. My family and friends (gradually) supported me through my realisation and diagnostic process, and continue to support me now.

—————————————————————————✿

I am now part way through my third year of university (hooray). As soon as I had my ‘official’ diagnosis, I applied for DSA (disabled students allowance). I filled out (huge) 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 (or more likely- a combination of both), at the last stages of the application/process I found out that I would 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. This was at the start of my second year at university.

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 was and still is inexplainable. Finally finding out/knowing that I was autistic after eighteen years of grief, self-doubt, bullying, misdiagnosis’ etc was incredible. If I remember correctly, I travelled home, hung up my coat, sat down at my desk and just cried, sobbed- for the sheer relief of it all. I genuinely don’t think I’ll ever stop being grateful to those who donated. 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 perpetually struggling a bit financially at university. 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 19 years. 19 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.