Childhood
I was diagnosed very late in life at the age of fifty and had no idea I was autistic.
As a child I was often bullied by peers and teachers for being different. Much of my time was spent on my own and being engrossed in my special interests.
I escaped bullying by truanting and became a bit of a vandal, street kid, and missed out on my education due to my difficulties.
My father heavily rejected me and after my mother’s death when I was eleven, I became mute and unreachable.
I struggled to fit in and even though my father was a psychiatrist he did not have a clue how to help me.
There was talk of sending me away to an institution, in those days little was known about autism.
My grandfather was my hero, and he was always kind and supportive towards me. We would walk for miles together in the countryside, play chess, and he taught me how to stand up and defend myself against bullying.
Mental Health and Trauma
Due to my traumatic childhood and relentless bullying, I soon developed severe bouts of depression and crippling anxiety. Also eating disorders and suffered terribly with insomnia.
Later I found out I was dyslexic, suffered from chronic fatigue syndrome and probably dyspraxia.
When I was nineteen my father died, and I experienced a period of being homeless in London. It was a downward spiral as I entered into deep depression and became isolated from society.
I was then admitted into a psychiatric hospital as a voluntary patient and spent 9 months or more trying to recover. It was a frightening place to be but also the best place as I met many kind and creative people from all walks of life.
On leaving hospital I experienced being homeless again and would sleep under the staircase of my local Samaritans office.
I later got married and lived in Brazil for a few years where my first son was born.
I started my own business as a landscape gardener and was quite successful, employing staff and covering the whole of London.
I had to stop due to an accident at work, deteriorating mental health and then became a carer to my youngest lad who was shortly diagnosed with autism.
Diagnosis
It was through my son’s diagnosis that I started to see my traits. I attended a training course for parents of newly diagnosed children run by the NAS and during that course I stood up one day and announced; ‘I am autistic’! It was a very surreal experience meeting myself for the very first time.
I am pro diagnosis as it can be a great tool to help us gain what little support and help is out there. A diagnosis can give us closure on traumatic lives and empower great self-awareness and self-acceptance.
To start the diagnosis process, it is a good idea to complete one of those online evaluation tests
I completed the AQ test: “Autism Spectrum Quotient (AQ)” https://psychology-tools.com/test/autism-spectrum-quotient
Then book a double slot with a good and open-minded GP, choose wisely as GPs are not that well trained. Go well prepared, write down questions and take medical and professional reports. Be aware that for females it can be very difficult and there is a danger of being misdiagnosed. Attend with a trusted friend or family member as the whole process can be stressful.
The National Autistic Society has pages of information you can print, even notes for the GP to help them manage your diagnosis request.
Hopefully then you will be referred to a psychiatrist who may then refer you to a diagnosis centre. Waiting lists can be long and in my case my diagnosis took three long hard years of battling. I was blocked at the second stage, but finally got a second opinion and was diagnosed at 50 in 2011 with Aspergers Syndrome.
Remember a diagnosis is not just a piece of paper, it is a life and can help others to grow and transform. I did more in ten years than I did in fifty as my diagnosis empowered me to research and understand myself better. I was able to break that cycle of trauma and stop blaming myself. I finally lay to rest my past and moved on with my life with greater confidence and peace of mind. I became the person I always wanted to be, and my diagnosis helped me gain access to housing, education, and other support.
Writer, blogger, speaker, and autistic self-advocate
I cannot change the past or catch up on lost years due to being invisible. However, it is important to note that the cycles of trauma can be broken and used to help others, to support and educate others.
My work and kind ethos allow me to reach out and support many vulnerable people in our community.
As a parent I know those feelings of being lost and overwhelmed. There is no manual when it comes to autism and besides, we are all unique.
I say this, be kind and maintain an open mind and heart. Autism can be disruptive and exhausting, but also rewarding, do not compare our children with non-autistics, we have our own way to be and to process information.
There is much support online, choose wisely. Be aware social media is a volatile place. Choose pages and groups that build you up and do not police you. Groups that are moderated well and are antibullying in nature.
My own page is inclusive, open minded and welcomes parents, professionals, and autistics alike.
I share information on education, housing, autistic rights, bullying, mental health, diagnosis and even my personal photos. Humour is a big part of my work and I share and support other advocates’ work.
I believe my page is unique and my ability to stand away from the crowd allows me to keep an open minded and warm-hearted ethos. It truly is a safer space, where people can visit, breath, laugh and be informed/listened to.
My page Instagram page is: Autism Support Community @autism_support_community
Being a father and carer
Nothing gives me greater happiness than being a father and carer to my lads, one on the spectrum. It is my calling and my past experiences no matter how painful have helped me to mature and be a wise loving father.
I have a very close bond with my sons and am so proud of how they have succeeded and grown.
One of my tips is Lego and board games that teach many skills and stimulate the parts of the brain that deal with motor coordination and speech.
I rescued my youngest lad from school and have been home educating for 6 years. I strongly recommend home education for the more vulnerable child lost in the system.
Since my son left school, his meltdowns stopped, and his anxiety disappeared. This has allowed him to flourish. Bullying destroys lives into adulthood so that stopped and now he has many friends while studying for his A levels.
Home education is a great option for some children, and it can literally save lives. It is a lifestyle change and can improve the health of all the family, who needs the stress of fighting schools?
For further expert information on home education please contact: “Ed Yourself – The Home Education Consultancy” https://edyourself.org
When Covid-19 restrictions hit the NHS, Lisa’s groups were delivered online which some families preferred as it fitted more easily into the demands of family life.
Pershy holds a BA (hons) in Special Education studies. She has worked in education and community settings with autistic people. She attributes her experience as Ethan’s mum as most prized, it makes her relatable to people who are in the same situation as herself. In 2010, with a grant from Southend council, she set up a support group for African and Caribbean families with special needs children.
In 2011 she reached out to Anna after watching her on the ITV news promote the Give Us a Break campaign. After meeting Anna, Mala was overjoyed when she was offered a voluntary role as a Charity Champion which has been an incredible journey; she is now the Culture Campaign and Communications Officer at AKO.
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