Be the change you want to see

Amy was diagnosed with autism spectrum disorder (ASD) in 2012, when she was 14 years old. Having always struggled through life – with social communication, overactive senses and processing information– now she has a diagnosis she feels she can inspire others.

Be the change you want to see

After reading the statistics around the shockingly low number of people with learning disabilities and autism in paid employment (just 6% of people with learning disabilities) and being motivated by a documentary on inspirational women from BME backgrounds, Amy decided to be that person people can look up to.

Amy hopes to make an impact on the learning disability and autism community, by being an inspiration and showing that anything is achievable.

She hopes that other people will see this and their perceptions will change too.

“I find where I am telling people I am autistic is the reactions are shocked. I’m a little sad about this as it shows me what perception of autism is. But I am glad that I am disproving that and showing that autistic people can study further education and be in different levels of work. Everyone in life needs support, some people just need a different type to others.”

But her work isn’t just challenging perceptions, it’s changing people’s lives directly.

Helping people communicate better

As Young Champion for the Anna Freud National Centre for Children and Families, Amy started leading a research project to improve communication between children and young people, and the adults who work with them in health and education.

Lingo stemmed from her own experiences finding it difficult to communicate her needs and feelings. This national project was completed in November and culminated in not only guidance for school staff but a project with the National Gallery displaying artwork that communicates feelings and emotions.

The resources and artwork for Lingo were publicly launched on 1 November.

Working with children and young people

Amy works a lot with children and young people who have mental health problems and learning disabilities. She finds that communicating with young people can be easier than talking to adults, and shares her own experiences of isolation and not being understood. She doesn’t want anyone else to feel that way.

Locally she has helped children and young people, and their families, to access third sector, voluntary organisations or community groups that can offer support the NHS can’t provide.

She has also helped young people and adults with autism or learning disabilities to find places where they can learn skills for future employment opportunities, and places where they can volunteer.

Nationally she has helped through being a patient voice on organisations and work streams, ensuring that the views of children, young people and young adults with autism and learning disabilities are taken into account during senior decision making.

How does her autism affect her?

Autism is a neurological condition that affects how people experience the world around them.

Amy has no control over her overactive senses – she cannot regulate her body temperature and is very sensitive to warm weather. Lighting can also overwhelm her and every so often she can’t enter a meeting room without turning off the lights.

She also struggles with processing information and social communication. The way things are written or said can be difficult to understand, which can lead to misinterpreting information and confusion for herself and those she’s trying to communicate with.

These factors can cause a meltdown – which is her body’s way of coping with this stress. When people aren’t aware of autism, there can be more problems…

“I find society and the people around me sometimes struggle. Mainly because there are stigmatising perceptions of autism. This often leads to people not realising that I have autism or not believing that I do.”

But Amy doesn’t blame people for this, she’s using her positions to help more people understand autism.

Achievements to be proud of

Giving hope to people with learning disabilities and autism, and changing perceptions people have, is no easy task. But Amy has taken it in her stride, and at the age of 21 her list of achievements has continued to grow with each year…

2015

• Became a Governor for an NHS Foundation Trust that provides care and treatment for people with mental health difficulties and learning disabilities.

2016

• Co-opted as the youngest local councillor in her district.

2017

• Elected as the Lead Governor for the Trust and joins a National Lead Governors Association.
• Secured a position as the Service User Lead for their county street triage and crisis pathway redesign strategy group.
• Became a Young Champion for the Anna Freud National Centre for Children and Families.

2018

• Elected as Chairman of the National Lead Governors Association.
• Selected to be a member on the NHS England Youth Forum, championing autism on a national scale.
• Graduated university with a 2:1 BA Honours in Politics and International Relations with Quantitative Research.
• Awarded a Special Achievement Award for achieving her degree.
• Offered a place onto the NHS England/People Hub Peer Leadership Academy, leading onto work with the NHS England Personalised Care Group.
• Beat a large number of candidates to become an NHS England Patient and Public Voice Partner for the Online Services in Primary Care Digital Transformation Stakeholder Forum, helping ensure NHS technology is inclusive and accessible.
• Started her Masters in International Social Policy.

We are inspired by how much she has achieved so far – she’s giving people someone to look up to and challenging perceptions in a proactive and kind hearted way.