Friday 7th August 2020 – by Victoria Busuttil
Today I feel deep seated, unadulterated, rage and anger.
I’m sat here drinking tea, freshly poured out of my favourite tea pot. I politely dunk my Rich Tea biscuits. Feel sorry for the dog and give her an occasional biscuit. I love the sound she makes when she crunches, it is quite stimmy and I like it.
I digress – f**king hell, I can’t even rage conventionally.
I’m a bit of a novice at expressing rage and anger, as you can probably gather.
Why am I angry, I hear you ask?
Actually, I don’t care if you don’t ask because I’m going to tell you in my own inimitable style. If I were you, I wouldn’t ask because it’s going to be one hell of a s**t storm rant. Put those ear defenders on. Scroll on by because I f**king well wish I could do that with my life at the moment.
I am angry with the system.
I am angry at being misunderstood, not heard, expected to communicate verbally when I am bordering on non-speaking due to overload.
Last April I was struggling with mood swings and suicidal ideation. I had spent 6 months withdrawing off a medication. I’d relocated from the South East of England to the North East coast. I was struggling. I wasn’t depressed -I was overwhelmed. I was scared by these sudden intense and intrusive thoughts. I couldn’t understand what was happening. I was in a place where I felt safe and life was ok.
I had been on the same anti-depressants for the last 15-20 years. I was told that the drug was no longer working as the dose had been increased to its maximum. I know now that no drug would ever have worked – I wasn’t depressed. I was experiencing extreme burnout.
The GP prescribed a different drug. He said it was a newer, more effective drug, less side effects. I believed him, took the prescription. What he didn’t tell me was that this drug is notoriously difficult to stop taking and subsequent withdrawal effects can be horrendous. When I am in a state of burnout or overwhelm, I will comply with GP’s and other professionals, just to escape. I should have researched the drug before I gradually tapered off the previous medication and introduced this current one. To be fair, I wasn’t in a fit state to research anything.
Ironically, the GP lectured me on how taking medication wasn’t a long-term option.
I stabilised for a couple of months, but my mood began to slump again. I could never see the same GP, so different doctors just kept increasing the dose. Finally, a lovely doctor took on my case but to be honest it was too late. We tried to access mental health services, but I was refused.
I gave up on life being any different, there was no alternative.
A couple of months ago I received a date for a second social care assessment (10 months waiting). The assessor was helping out the learning disabilities team I’d been referred to (my LA don’t know what to do with Autistic adults who do not have learning differences). He actually listened to me. He understood my situation and immediately put in a referral to the adult mental health team. Eventually, I was seen by a fantastic psychiatrist, who also understood my Autistic neurology. She understood that I was hyper-sensitive to the medication I had been prescribed for so long. She understood I wasn’t depressed. What I needed was medication that dampened my near constant fight/flight adrenaline response.
In order to recover and get on with my life I needed to get off the current medication. She devised a gradual tapering off over 10 weeks.
I am on week 6 and I am entering a really tough phase. I was struggling to cope with the nausea, but it only lasted a week after the drug step down and for the other week I was ok. The last stepdown has been horrific, unrelenting and is offering me no reprieve. It’s massively impacting my already fragile sensory system and consequently, my mood.
Yesterday, was the first full day of being child-free, no demands, no appointments. My daughter has been out of school since January with burnout. She hasn’t left the house. I understand and accept this. We’ve got through together (with a lot of cursing along the way). However, adding in the withdrawal symptoms has been hard on both of us.
She went to York with her Dad and brother for 5 days. As much as I love her, I needed a break.
I had dreamt of this break for so long.
I just wanted to get my threads and embroidery silks out and sew and sew and sew. Glorious repetitive running stitches that explored the minute and intricate patterns imprinted in the cloth. Basking in that most beautiful sound of the needle piercing the cloth. The sound and feel of the thread gliding through my fingers. Marvelling at the minute running stitches changing in colour as the variegated silks performed their magic.
Nope it didn’t f**king happen.
Because I felt nauseous. The withdrawal from the chemical dependency is messing with my brain. I struggle in normal circumstances, but this is on another level.
Next came the pixelated vision – visual migraines.
I searched the house for my migraine glasses. I have been organising the house lately and consequently can’t find a f**king thing. This is made more difficult when your vision is obscured by pixelated world which is worthy of a Minecraft creative genius. Eventually, I found a child’s pair of Dora the Explorer sunglasses (don’t ask). I then embarked on a search for Ibuprofen. Once the pain subsided and my vision returned (and the indents of the Dora the Explorer glasses in my temples had disappeared).
I got mad.
I never wanted to take these drugs in the first place. These drugs have meant that I have literally lost 20 years of my life. I just accepted this situation because I thought I needed fixing, That something was wrong with me that I couldn’t manage with everyday life.
There is nothing wrong with me. The thing is I didn’t need fixing in the first place. That’s why the medication never worked.
It wasn’t until I happened to connect with another undiagnosed autistic adult a few years ago that I began to realise what was going on.
I started to read first-hand accounts of late diagnosed women. I realised that the suspicions I had when I was studying psychology in the early 1990’s and read Donna William’s book ‘Nobody Nowhere’, were in fact correct.
At the time I had dismissed my intuition because the taught narrative at the time was that Autistic individuals treated people like inanimate objects. They lacked empathy. They were locked in their own world. I had too many feelings and cared for people deeply.
My intuition was spot on, so, in 2017 aged 44, I sought a private diagnosis. The assessment confirmed that I was indeed Autistic and not mentally ill.
I felt relief and euphoria.
I am wonderfully, beautifully, uniquely Autistic. I expected the world to understand. I thought that armed with my diagnosis, I would gain the support and understanding that I so desperately needed. I naively thought the world had moved on.
The autistic world has but society hasn’t.
That realisation led to extreme burnout.
I was refused the support I needed and was prescribed drugs that weren’t designed for my neurology and my hyper-sensitive system. The prescribed medication has damaged me not helped me. It has restricted my freedom and prevented me from living my life.
I’m f**king sick of being grateful for morsels of ineffectual support and accepting what the system offers.
I’m angry and I want to facilitate change – right here in this moment.
But I can’t, only through my words and my thoughts typed on these pages. Hoping some person will take note, stand with me and tell their story too. Collectively our lived experience will hopefully be listened to and change will evolve. Then my experience won’t be for nothing.
Many medical professionals don’t understand the experience what it is to be autistic.
I certainly can’t encapsulate it in a 10-minute appointment.
I can’t verbalise my unique neurological differences. How I experience the world differently to the average neuro normative individual.
The medication drugs trials are largely based on the neuro normative individual. Guess what? That’s not me and it’s not a significant minority of the population.
Any training professionals subsequently receive (if any) about autism is largely delivered by organisations that don’t actually consult Autistic individuals. They deliver training based on regurgitated textbook facts, based on observable behaviour not actual lived experience. Training needs to be delivered by actual Autistic Adults. These people do exist in the form of Autistic Advocates. They are there waiting, ready to go.
Most training doesn’t reflect our lived experience and this needs to change. I’m not neurotypical, I don’t ever want to be. My brain doesn’t work the same, it’s natural variation not a disorder. I don’t experience or process the world the same as non-autistics.
Doctors are trained to recognise symptoms, to treat illness.
I am not ill.
I am Autistic.
I wasn’t depressed when I visited that GP on that fateful day and that has led to this moment of me writing out my anger.
I told that doctor that I wasn’t depressed, but they made the judgement that I was. I just couldn’t communicate my depression because I ‘had’ autism.
The same doctor that had supported me withdrawing off a previous medication. That medication had caused tremors so bad I couldn’t hold a cup of tea steady without burning myself. I couldn’t create, sew, something that is integral to my wellbeing. This very same doctor, there and then, prescribed this medication that I am into week 6 of withdrawing from. That I am now chemically dependent upon.
This medication hasn’t helped me and at its best has numbed me from the world and all its beauty. In fact, it has made my daily life worse. How many times do I have to say I am not depressed for them to listen? I am overwhelmed with the world that moves too fast, is too bright and is too loud.
I am autistic and professionals do not know the damage these drugs do to my system that they so readily prescribed and how they affect my functioning, my quality of life. Naively, I kept going back to the doctor. I could never see the same doctor. I could get the referrals to the specialist professional that I needed but was refused as didn’t meet their arbitrary constructed criteria. Instead, different doctors kept increasing the dosage to the maximum and now I am addicted.
I am needlessly suffering because of the ignorance of the system.
The failure to listen or to understand the real-life experiences of Autistic individuals. It sometimes feels that we are so pathologized, that any sense of humanity is lost, and we are dehumanised.
We are a problem to be solved, which is far from the truth.
I am angry, I feel deep grief, not for being autistic but because I am disabled by the system. I’m angry because I can’t fulfil my potential. I am trapped in this body and in this society that isn’t designed for me or won’t make the accommodations for my neurology.
Things desperately need to change, and I want to be part of this. I don’t want to sit here and moan and grumble. I want to take action. In order for me to be part of this change I need to get off this f**king medication.
All I ever wanted was peace in my head. To understand myself and my experience. I’m beginning to do that because I’m connecting with my community – my neurokin. My experience isn’t an isolated one. I talk online to other Autistic adults and listen to webinars led by those with lived experience. They too don’t have the answers. What they do offer is the opportunity for authentic connection and acceptance. Alongside them I continue to learn about my neurology, culture and identity as an Autistic Adult. This is what I need – a safe place to connect, explore and learn.
I don’t need social skills programmes. I don’t need ‘back to work’ programmes because I can’t work in the environments that exist. They’re not designed or adapted to my needs. It sets me up to fail every single time and yes,
I get back up, but I’m getting tired. Why is it so hard for professionals to take note of real-life lived experiences? Why is it that only the Autistic population who are expected to change and adapt? Why can’t professionals only pay attention to those who have no lived experience of our inner world and emotions? It would save so much money, so much trauma, so many lives, if they just stopped, listened and involved the Autistic community. We are the experts.
I don’t want my life to end or to give up on life. This week I felt like doing just that.
Life is precious.
Life is beautiful.
But in this moment, I feel imprisoned.
I can’t walk in the woods and look at the most amazing patterns of the leaves and flowers. Watch in wonder at the shadows the trees make, the reflections dancing on the pathways with the breeze. I cannot walk down to the sea and watch the waves that calm my racing, spiralling mind.
Because of the drugs I was mindlessly prescribed. I complied and trusted the doctor as this is my nature. I naively thought that they were the expert.
I am the expert, I have the knowledge.
This my body (no other f**ker would have it now) and I know best and god help anyone who tries to prescribe this s**t to me again.
My story is evidence as to why autistic people with lived experience need to be listened to, to train, to be part of any research and inform professionals. So, in the future people like myself can fulfil their potential and live their lives in the way they are meant to.
I have no words left I’m tired.