O L I V E R : I N T H E N A M E O F A U T I S M
Oliver's sister Heather, and his brother Adam
Oliver's mother and father
Mrs Paula McGowan
Tenacious and Strong Mother
Human Rights Activist
Honoured with the OBE
Order of the British Empire Recognition
for her services to People
with Autism and Learning Disabilities
Health Education England Member
and part of the English National Health Service
Award Winning Campaigner
Catalyst for a Revolutionary Petition
The Oliver McGowan Mandatory Training in Learning Disability and Autism awareness
for the English National
Health Service and Social Care Staff.
Petition supported by 230.000 people
approved by the English Parliament
and into law next year in England.
HOST: Mrs Paula McGowan
INTERVIEWER: Emanuela Clari
Saturday 29 January 2022
"...We knew that He was Special..."
Int: Thanks Mrs McGowan.....Paula, as you gently recommended to me, it is a great honor to be here with You and to share your extremely inspiring and touching story. Your son Oliver has left you, and not only to you, a splendid legacy made of smiles, determination, no complaining, positive strength, courage and generosity you have completely embraced......let's introduce the magnificent Oliver to our readers depicting Your family portrait...
Mrs McGowan: From the moment Oliver was born, we knew that he was special and our love for him was overwhelming. Oliver was born a month premature and at three weeks of age he developed bacterial meningitis. He was very ill and we were told by doctors they did not expect him to survive. Amazingly against all odds and many months of hospital treatment Oliver’s strength and determination shone through and he began to recover and as always with that beautiful heart-warming smile that everybody was drawn to. People who met Oliver warmed to him and could not resist spending time with this baby, there was something about Oliver that drew people to him, and this lasted throughout his life, and now in death.
Oliver was popular at school and College. They described him as a ‘very intelligent, friendly, articulate and gregarious young man‘, who was liked and admired by all who knew him. He demonstrated an ability to learn quickly and assimilate information. He was supportive of other students learning new skills. In particular, he was very keen to help students with mobility and communication needs. The college found that he ‘settled in so well people were asking if he was a new member of staff‘. They described him as inspirational, kind, and considerate.
Oliver brought so much happiness and fun to our lives; he always saw the best in everything and taught all of us how to look at things differently. He would often challenge people’s bias and prejudices. He never failed to light up a room with the sound of his laughter. He wanted to make everybody happy and did his best to achieve that. Despite his limitations, he never complained or asked, “Why me”. He accepted everything and always with a smile. His courage and enthusiasm were inspirational.
"...He never failed to light up a room
with the sound of his laughter..."
Int: I know Oliver had many interests and passions! Would you share some of them with us? I'd love to discover especially about his attitude and his way to face adversities, challenges and also his wins ...
Mrs McGowan: Oliver’s disabilities did not hold him back. He had a can-do attitude and amazed everybody with his achievements. Oliver was determined to overcome any adversities that stood in his way. We were told that he might not walk, Oliver walked at 19 months of age. We were told by his neurologist he would never be able to hop on his left foot, Oliver was determined and by the next appointment three months later, he was hopping on that left foot. His neurologist labelled him as his miracle patient who defied all odds.
In 2008, Oliver was selected by the England Football Association (FA) to attend its emerging Talent Programme. In 2009, aged 11, he attended formal trials and was selected by the England FA development squad. He attended weekly training sessions and played in matches for the Southwest and Northwest centres of excellence, often travelling hundreds of miles. Oliver competed at a high level and was described as a skilled and prolific striker who was admired and respected by his team.
In 2012 Oliver was spotted at a school athletics event by a UK/England Athletics Paralympics coach. Within two weeks Oliver competed at county level, where he was placed third best in the UK, at 200 metres, and was a listed athlete on UKA Power of 10. Oliver was also training with Team Bath to represent the UK as a Paralympian. Oliver’s coach at the athletics club described him as a dedicated athlete and he trained regularly, both in Bath and in his free time, at home. Since joining Bath, he had shown great enthusiasm and a willingness to learn and hoped to become a Paralympian. He certainly showed great potential and in a short time improved a great deal.
Oliver passed his school higher examinations and was a school prefect and a member of the school council. When he went on to attend college, he was the youngest student at aged just 16 years to be a member of the college council.
Int: Oliver's life has clearly reflected a child and then a boy who for sure had a great positive impact on people, would you recall with us some specific events depicting his special gifts?...
Mrs McGowan: On Oliver’s first day at college, there was a non-verbal student who had cerebral palsy and was embarrassed to use his electric speech box. Oliver spent his first morning with this boy talking and encouraging him to use the speech box. Oliver’s warm and friendly nature won this boy over and he began using the box.
Another occasion that stands out is when Oliver was a patient in Bristol children’s hospital. A boy the same age as him had cancer, was in pain and refusing to take his medications. Oliver went into his room, listened to music together. Oliver gently explained to this child the importance of taking his medications and that he also had to take anticonvulsants to help with his epilepsy. The boy came out to the nurses and asked if he could have his medications. One nurse was so overwhelmed with Oliver’s empathy and support of other patients when he was clearly so poorly himself, cried.
After Oliver died, I was reading through some of his conversations he had with his friends on messenger. I read one such conversation from a girl in his class who was asking Oliver’s advice regarding dealing with friendship issues. I was impressed by Oliver’s responses, they were full of kindness, empathy with fantastic advice on how to deal with different issues. I was proud of him.
When Oliver died and we were designing his headstone, I asked his friends and teachers for words they would use to describe Oliver so they could be engraved onto his headstone.
"...When Oliver died and we were designing his headstone, I asked his friends and teachers for words they would use to describe Oliver so they could be engraved onto his headstone..."
Int: I'd love to highlight some of the funniest moments you lived with your son, and to know more about his wicked sense of humour, as you defined it...
Mrs McGowan: Oliver had a very astute observational humour. He saw and noticed things others wouldn’t notice. He would say things that were so honest, and downright funny. Oliver’s laughter was infectious, he was a very positive person and saw the fun in most things. Oliver’s laughter, zest and enthusiasm for life, and music was the fabric of our home
Int: For sure You learned a lot from him and so did he from such a wonderful and strong family like yours... what's the most important lesson you taught him and what's the most important message You received from him?
Mrs. McGowan: We taught Oliver to be kind and caring, to respect other points of view. We taught him to have integrity and loyalty. To stand up for what he believed in and to trust his instincts. We taught him to have perseverance, stamina and determination, to believe in himself.
Oliver gave us love, real love. He demonstrated to us what all the things I have mentioned above looked like when put into action. Oliver taught us not to take things for granted and to always have hope. He taught us to see the good in people when it wasn’t always easy to see. He taught us how important it was to call out prejudice and bias when we saw or heard it.
"...We taught him to have integrity and loyalty...."
"...Oliver taught us not to take things for granted and to always have hope...."
Int: From your profound experience what would you highly recommend to those mothers, fathers and relatives who daily live autism? What should they pay particularly attention to?
Mrs Mc Gowan: My advice would be to love their children for exactly who they are and not make them to conform to a neurotypical society. To celebrate their achievements and to live in the moment. I would talk about the many wonderful Autistic professional people I know, who have achieved great things in life. I would encourage them to seek advice and information from autistic people who understand what it is like to be autistic and how to overcome the many barries that life poses for them.
I would tell them to have confidence when speaking to health, education, and social care staff about their children. They know their children best of all and are their children’s advocates. To know that they know what is best for their children
I would tell them that Autism does not need fixing it is a divergence of what is regarded as typical.
Int: Another very important topic I'd like to point out with you is related to the general definitions of Autism we find...which are not, in my opinion, completely using the right words to be conform and correct towards Autistic People, either children and adults.
Let's have a look, just to mention a few, at some samples regarding what it is nowadays stated onto dictionaries and from associations professional in the field...moreover general definitions...let's remember... which reach an international audience all around the world and on which we stuck our basic “knowledge” of Autism and by which we are certainly influenced:
"Autism is a Neurodevelopmental disorder characterized by difficulties with social interaction and communication..."
(extract by Wikipedia)
"Autism is a serious mental condition that makes it difficult for someone to react to and communicate with other people..."
(extract by Mac Millan English Dictionary)
"Autism is a Neurodevelopmental disorder that effects information processing. People with Autism have difficulties with social and communication skills. They have restricted interests and engage in repetitive behaviours. And it may be difficult for them to form emotional bonds and parental attachment..."
(extract by psychologytoday.com)
"Autism Spectrum Disorder, ASD, refers to a Neurodevelopment disorder that is characterized by difficulties with social communication and social interaction and restricted and repetitive patterns in behaviours, interests and activities..."
(extract by The American Psychological Association)
Oliver's life, and millions of other Autistic children and adults, prove those words wrong.
What would Oliver say about it? Would he agree with the statements “Autism it is a disorder..” characterized by difficulties with social interaction and communication?..” “Autistic people have restricted interest and activities.” What would be your new definition of Autism?
Mrs McGowan: I have been talking about this outdated narrative recently. Autism is not a disorder; it is not broken or needs to be fixed. It is not a neurodevelopmental disorder either, it is a neurodivergence, meaning different from neurotypical I do not believe that Autistic people have restricted interests at all, restricted to me, means narrow. Oliver had many interests, football, athletics, art, theatre, cinema, music, gaming, I could go on and on.
There are so many incorrect medical narratives that describe autism, poor eye contact, sense of humour, hugs. Sometimes this may be true, but in my experience that this is far from the truth. I believe that professionals often forget to describe autism as a stand-alone diagnosis but describe it alongside co morbidities such as intellectual disability.
I do not believe that autism should ever be regarded as mental health condition. Again, it is a neurodivergence regarding social emotional and language communication. It’s not broken, just different.
I strongly believe that we should be asking the Autistic communities to give medics and society the correct narrative to describe autism.
Oliver would agree with everything I have said.
"...I strongly believe that we should be asking the Autistic communities
to give medics and society the correct narrative to describe autism.
Oliver would agree with everything I have said. "
"...Autism is not a disorder. "
"...it is a neurodivergence..."
Int: To give some help to all of us....I really would love you to list the most significant negative approach to Autistic People you experienced and the correspondent positive concrete solutions or suggestions You would recommend instead, in all circumstances from daily life to doctors' approaches...
Mrs McGowan: I personally witnessed ignorance and arrogance from professionals who had very little to no understanding of autism. I observed diagnostic overshadowing, where a professional does not understand a communication linked to an autistic person and labeling it as something altogether different.
I saw professionals not understanding or making reasonable adjustments which is the law in the UK.
I have observed professionals ignoring or misusing laws such as the Autism Act, Mental Health Act, Mental Capacity Act, Human Rights Acts. I have spoken to many families whose loved ones have been locked away in what I can only describe as institutions, where they have been inappropriately chemically coshed and restrained. Many have been locked away in seclusion in what can only be described as cages, the only human contact they have is when food is shoved through a hatch in the wall.
A lot of the above can be helped with education and training such as The Oliver McGowan Mandatory Training in Learning Disability and Autism awareness for Health and Social Care Staff. Oliver’s training is based around the learning disability framework and the Autism framework including everything I have mentioned above. It has been Co-designed, developed and delivered alongside learning disabled people and autistic people. If we truly want to learn about autism and learning disability, we must learn directly from these communities who know and understand themselves very well.
Autistic people and their families need good supportive preventative care in the community, things should never be allowed to escalate to crisis purely because needs have not been met by health and social care staff.
"A recent independent Learning Disability Mortality Review (LeDeR) unanimously
concluded Oliver's death was avoidable. ..."
Int: Dear Paula I have been touched forever by Oliver's smile but also by Your gentle determination to achieve tangible, solid goals for a world-wide benefit. To mention one of your latest successful campaign ...meaning the rewarding petition for a Mandatory Training to be introduced into the English Health System Service among and for all operators... ..it's amazing how your perseverance turned a serious necessity into an imminent law and reality...please tell us all your efforts, from the very beginning to your great factual results...
Mrs. McGowan: A recent independent Learning Disability Mortality Review (LeDeR) unanimously concluded Oliver’s death was avoidable. The review made 31 recommendations. Oliver was given excessive drugs due to medical staff not understanding learning disability and autism, impacted by seizure activity.
They did not ever try to adapt the environment to meet his needs but used excessive restraint methods. They failed to make any communication with community-based professionals who were working with Oliver on a daily basis and knew him well.
Oliver died because clinicians didn’t understand Learning disability, autism and how this affects a person. There is a full homicide police investigation into Oliver’s death. The GMC are also investigating Dr Monica Mohan.
They didn’t understand how to make reasonable adjustments for Oliver; they did not read his hospital passport which would have told them exactly how to do this.
Clinicians did not follow the laws, the human rights act, the autism act, the equality act and the mental capacity act
They were misunderstanding Oliver’s autism which resulted in diagnostic overshadowing.
They were not familiar with STOMP or ASK Listen Do
These are all core ingredients that must be at the heart of The Oliver McGowan Mandatory Training.
And this is where Oliver’s Campaign was born. I truly believed that Doctors, Nurses and Social Care Staff had appropriate and meaningful training to help them to understand people who have a learning disability and people who have autism. During the Inquest into Oliver’s death, it became blindingly obvious that our health and social care staff did not have this training. I felt so strongly that this was just wrong, first for patient safety, but also it was wrong that our clinicians are not given the skills to help and support people like Oliver when they are in sensory crisis and overload especially when they are ill.
As a result, I launched a parliamentary petition, gaining over 56,000 signatures. To gain these signatures, I had to learn how to use social media, learn to engage, and grab the attention of politicians, doctors, nurses and medical colleges. It appears I was doing okay. My petition was successfully debated cross party, as a result, the Right to Be Heard document was born, announcing that all health and social care staff would receive The Oliver McGowan Mandatory Training in learning disability and autism. Importantly, it would be co designed and delivered by learning disabled people and autistic people. The response to the ongoing pilots, have simply been outstanding, with many attendees saying it has empowered them to change their practises going forward.
Int: To complete this such inspiring interview please Paula share here with the readers all the links to be connected to you, to your news and to your future campaigns...