Nineteen year old Mair Elliott gave a passionate speech at our recent conference on ‘Improving Mental Health in Children with Autism, ADHD and Learning Disabilities‘.
Mair was diagnosed with autism aged 15 after experiencing severe mental health problems. At the conference she shared her experiences:
“Truth be told when I was asked to speak to you today, I was a bit intimidated. I don’t have a fancy doctorate, I don’t even have a degree and I haven’t been doing any experiments in my lab. I am not in charge of any services, I don’t represent any particular organisation standing in front of you here today.
But what I do have is an Autism diagnosis, and I have diagnoses of Depression, Anxiety, Anorexia Nervosa, and Psychosis. We could argue that maybe I am the most qualified to talk at a conference about neuro-disability and mental health.
I started to feel different at 6 years old. I realised I could see the world in a different way to my peers, I noticed that my fellow classmates could communicate in a way that I couldn’t understand. This left me with an uncomfortable exposed feeling, and even at six years old I knew that being different made me vulnerable, which led to me deciding to learn to be ‘normal’, whatever that is. I suppose in true Autism form I decided to do this without including or informing anyone how I felt or what I was doing.
I learned by watching other children, observing their body language, facial expression, hand gestures, tone of voice. And then I copied, as I grew up I become more able to be intelligent in the way I did this, I could test hypotheses, I could notice patterns, I could create flow charts and diagrams in my mind to navigate socialising. It worked well and I went along in life with no one catching on and realising I was different. Even though that was what I was aiming for at the time, it also had some side effects. I grew up thinking I was a failure, I grew up thinking that my true self was a disgrace, something which should be hidden away.
It was when I reached 14 years old that the cracks began to appear. I started to feel quite low, and got unusually anxious over certain things. I actually brushed it off thinking it was just teenage angst, I ignored what was going on in the hope it would just go away. But when I went into year 10, the beginning of GCSEs, things went downhill rather quickly.
It reached a point where I was in the depths of depression, I felt as though I was sinking beneath an ocean desperately trying to breathe and the weight of water pushing me down. The anxiety I had was never-ending, constantly in a state of red alert. Having anxiety is a bit like when you’re home alone and suddenly you hear noise coming from somewhere else in the house, your thoughts start racing, you can hear your heart pumping faster and faster, a lump of fear and dread weighs down our ribcage and freezes your airways. For someone with Anxiety, that feeling never stops.
My appetite diminished and my ability to complete even simple tasks faded away. I couldn’t sleep because my brain wouldn’t switch of. The only relief I could find came from self-harm. Self-harm acted as a conversion from emotional pain into manageable physical pain. All of this added upon the utter confusion and disorientation I had over how I was feeling and what was going on in my head.
The school noticed very quickly that I needed specialist help and referred me to a primary mental health nurse. I think I saw the primary nurse twice before he then decided I needed more specialist help again.
I started seeing a psychiatrist every couple of weeks in specialist CAMHS. I was very very lucky that I wasn’t put on a waiting list, to this day I am unsure why or how I managed to bypass the waiting lists. I wish I could share that secret with you, but I have no idea what it is. I was diagnosed with Depression and Anxiety to begin with. But my psychiatrist noticed that there was something underlying and pursued an Autism assessment. I was very lucky to be able to jump the waiting list for that as well, because in my local area the waiting list was something like 7 years long. I was diagnosed with Autism when I was 15 years old.
Getting a diagnosis explained to me why I had felt so different. It helped me to realise that I was not a failure, and it helped to explain why I found this world so overwhelming. Getting a diagnosis was the very first step in my journey to self-awareness. But by then mental illness had a firm grasp on my life.
I was put on a variety of medications, none of which had the desired effect, I had a course of CBT which although helped somewhat it wasn’t nearly as impactful as was required. Over a year I continued the descent, it got the point that I was having panic attacks daily in school and full on out of control meltdowns in the middle of the school corridors. I spent many evenings sat in A+E because I had self-harmed or was very suicidal. I started getting hallucinations, I heard voices which shouted derogatory comments at me, and I saw people who I believed were going to hurt me or my family. I had no control, and was detaching from reality.
It was decided that community CAMHS couldn’t support me, and I was hospitalised. I was actually in a psychiatric unit across the river from here in the Maudsley, which is actually about 5 hours from my house. I spent 3 and half months there before being transferred to a unit slightly closer to home, where I spent about 3 weeks.
Community CAMHS didn’t react in the best way to my discharge and I didn’t actually see anyone for at least 6-8 weeks after being discharged. I relapsed over the next 6 to 8 months and became engulfed in the bitter and cold world of Anorexia Nervosa. I was almost to the point of being put back in hospital, until one day I had an epiphany style moment when I collapsed on my bathroom floor. I realised that I didn’t want to live my life jumping from hospital to hospital, I didn’t need to surrender myself to illnesses which made my life hell, I didn’t need to be in pain.
From that point onwards I pushed and fought for the things that I knew would help me, like Dialectical Behaviour Therapy, Family therapy, no medication. I worked hard to break free from the illnesses which ruled my life. Two years on and I can stand in front of you to tell you my tale.
We all are probably aware of the downfalls associated with CAMHS. Long waiting times, lack of access to the right treatments, overuse of medications, lack of family involvement, lack of local inpatient facilities, changing staff, lack of communication between different services, poor resources and funding, etc. I have experienced pretty much all of those things, and felt the impact these issues can have on someone already suffering. Effects like distrust and inability to build therapeutic relationships with practitioners, not being able to feel safe or comfortable in the environment, disjointed support and having to repeat my story over and over, having to go hundreds of miles from my home for appropriate care, my family being treated like a problem rather than part of the solution.
Living with a disability is hard, living with mental Illness is hard, getting help should be easy.
I want to bring up at least one positive point about CAMHS and that is how hard the staff work despite not having the resources necessary to do everything that is asked of them. It’s easy to place blame on individuals when nothing seems to be going right. I know how hard community and hospital CAMHS staff have worked to look after me over the years.
The truth is some things in this world are going to be more difficult for me, I will probably always walk the tightrope above the chasm of mental illness. I do need extra help with some things in life compared to other people. My autism brain is not fully compatible with a neuro-typical world. To deny all of this would be foolish, and I would be setting myself up to be disappointed. But give me the right conditions, teach me the right things, give me the right kind of help, watch me thrive.
I am 19 years old and so far I have contributed to Welsh Government’s enquiry into children’s mental health services in Wales, which lead to an extra 7.6 million being ring fenced for the service each year, I have done 2 current affairs programmes which aired on Welsh national television, one of which won a BAFTA Award and is shortlisted for the Celtic film festival. I have spoken at conferences, seminars and events of all shapes and sizes, I have spoken about young people’s mental health in the Welsh press on many occasions. I have co-written a report on the wellbeing of children and young people in Wales which has been widely endorsed, including by Welsh Government. I am a trustee of a Wales wide charity which supports over a 1000 people with serious mental illness and their families. Cardiff University’s National Centre for Mental health and I was commissioned to undertake a research project in my county looking into the experience of young people with Autism in secondary schools.
I recently visited my old school, where I went through a lot of the dark times over the past years. Seeing that place again, walking the corridors and speaking to the people made me realise how far I have come. I could be modest and say that it was nothing, any one could have done what I have done, but actually, I worked hard to be where I am today. I kept taking steps forward when all I wanted to do was give up. I fought for myself and for all of the other young people in Wales in similar situations, I have opened up to thousands of people about my diagnoses, I have faced stigma, misconceptions, stereotypes and ignorance. I have faced things most of my peers couldn’t even imagine, yet I have achieved more before the age 20 than some people do in a lifetime.
I am not ashamed to have Autism, I am not ashamed to have mental health problems.
My Autism makes me a driven, hard-working, passionate person. It means I have high standards and will complete any task that is asked of me at the highest quality I can possibly manage. It makes me organised, honest and authentic.
Having been through mental illness has taught me to appreciate the little things, like eating a bowl of cereal in the morning, the sound of the wind through the trees, and the ability to smile and be happy.
I no longer see my differences as a failure on my behalf, I see them as a blessing.
Don’t lose hope when you feel that life is throwing too many obstacles in your face, don’t lose hope for your sons, daughters, siblings, parents, friends, clients – when the right conditions are eventually found it will all have been worth it.
Thank you for listening”.
You can watch the video of Mair’s presentation here.