Awareness, Acceptance, Action
Autistic voices share their perspectives on ‘Autism Acceptance Month’ this April.
The following article documents a Q&A Tyneside and Northumberland Mind had with clients of our ‘Autism and Me’ Northumberland Autistic Adult Support Programme, and our ‘Triple A’ Gateshead Autism and ADHD Support Programme. It’s purpose is to highlight voices that showcase real world experiences, what Autism Acceptance Month means to them and to create greater awareness; challenge outdated misconceptions and create greater acceptance.
The following expresses the honest views of adults newly diagnosed and awaiting diagnosis of autism living in the north east. We hope this helps create more positive awareness of autism and helps better your understanding of the neurodivergent experience.
World Autism Acceptance Month is defined as an event designed to bring everyone together to raise awareness and acceptance for the autistic experience. People, groups and organisations throughout April highlight how they are getting involved to build inclusive communities where neurodiverse people feel supported and understood. To our clients Autism Acceptance Month means acknowledging ‘the variety of needs and difficulties an autistic person can have and that everyone is different’ with a request for greater focus on ‘normalising our minds rather than pathologizing them because they differ from the statistical societal norm’. The purpose of this piece is to give a platform to autistic voices and celebrate what is important to the community: ‘the differences- but not treat us like a separate entity.’
If you are awaiting a diagnosis of autism, or ADHD – or are newly diagnosed – and live in Gateshead support from our Triple A programme could be right for you. Learn more and self-refer-or refer on behalf of another here.
If you are awaiting a diagnosis of autism on the CNTW pathway and live in Northumberland, we’re here to support you with our Autistic Adult Support Programme. Learn more and self-refer- or refer on behalf of another here.
What is one myth about autism you would like to debunk?
That autistic adults have issues intellectually
It’s absolutely not a superpower. Rain man is a poor stereotype that polarises how we are perceived
Being an idiot, of lower intelligence
It is not a bad thing, it’s not a disorder, everyone n the spectrum presents differently
That autistic people don’t feel emotions
How would you like autistic adults to be represented publicly?
By the many flavours of who we are and how we can be. Stop restricting us.
By autistic people- not neurotypicals assuming that they understand
That we are no different to anyone else. We can work, socialise and live independently and we aren’t odd or difficult we just experience things in a different way
Looking at lived experiences from the perspective of autistic adults
What change would make the biggest positive difference in your daily life?
Real acceptance, judgement free support and accommodations without having to fight for them
People get frustrated with me when I don’t understand things but I am also frustrated because I want to understand
That there is a wider understanding of the behaviour and feelings of those with autism and that I can’t always understand my feelings or verbalise them. Where possible make changes to accommodate this
If I was around more autistic people
What change would make the biggest positive difference in your daily life?
Real acceptance, judgement free support and accommodations without having to fight for them
People get frustrated with me when I don’t understand things but I am also frustrated because I want to understand
If I was around more autistic people
That there is a wider understanding of the behaviour and feelings of those with autism and that I can’t always understand my feelings or verbalise them. Where possible make changes to accommodate this
What strengths do you value in yourself as an autistic person?
Reasoning, empathy, creativity, problem solving
My superpower is knowing a lot of things. I am interested in everything. I love learning. I love art, it is my therapy and audiobooks
Resilient, straight talking and honest
What are you proud of that people often overlook?
Living in a neurotypical world as a neurodivergent and dealing with the additional hurdles we have to overcome
That I served 12 years in the military, the hardest 12 years of my life (I don’t like talking about my time served but I am proud of what I achieved)
That I am still here
What should workplaces better understand about autistic adults?
We thrive when our needs/accommodations are met, but struggle when they are not
We think differently- we may have some good ideas
That it doesn’t make them less capable to do their jobs and that they may just need some reasonable adjustments
What should healthcare providers better understand?
Co-morbid conditions
We are not trying to be difficult- we just need more time or differently constructed sentences
Not to label every emotionally dysregulated person with EUPD and actually consider Autism or a Neurodivergence as a possible diagnosis of their differences to prevent the trauma of misdiagnosis.
What would you like GPs to know and accommodate?
Double appointments help- it takes me a long time to process information
Radios in the waiting room are too much for me
Having an advocate to book and come to appointments with me would help me attend
I can not cope being in the waiting room- ideally, I would sit in my car and have a text to let me when to go in for my appointment
People need to understand about executive function and how this impacts me – making a phone call and getting to appointments are such a struggle for me
Continuity in who I see would help so I don’t have to explain my history and communication needs every time.
Clear next steps- book my next appointment, have a written follow up of clear next steps
Explain why they are taking these steps- don’t assume we know
Communicate in my preferred way- I may need to write it down because sometimes I am too overwhelmed to speak
What would you like decision makers to understand?
The decision makers are universes away from understanding our struggles. We should not be hidden or dismissed or belittled. Society needs our minds, but our minds need support.
There are too many autistic adults being diagnosed with personality disorders and mental health professionals not considering neurodivergence as a cause leading to trauma and stigma.as someone who experienced this and is now in trauma therapy as a result I feel very strongly that healthcare professionals should be prompted to consider autism as they would with any other diagnosis. I now have trauma and fear around expressing emotion in fear of them being used against me. In addition to the alexithymia associated with my autism. This means I have a very complex relationship with my emotions and probably will for the rest of my life all down to professionals not considering my neurodiversity.
What kinds of messaging feels harmful, patronising, or inaccurate?
What kinds of messaging feels harmful, patronising, or inaccurate?
The entire DSM, language of defect and lesser
I personally do not get effected by much due to having to mask my entire life
Stereotyping
What messaging feels empowering or affirming?
That we are not all ill or broken, just a little different. Some of the greatest discoveries in history were made by people on the spectrum, society needs diversity to thrive
That society are willing to make adaptions and recognise the difficulties and needs of autistic people
What should society stop doing during Autism Acceptance Month?
Using it as an excuse or think it’s cool because autism is a trendy thing to be now. I have struggled my whole life- it’s insulting the way people treat it.
Saying that we are over diagnosed. Parading out single examples of autism which can be detrimental to anyone different.
Assuming that all autistic people have the same needs and difficulties, as everyone is different.
What should Autism Acceptance Month focus on?
The variety of needs and difficulties an autistic person can have and that everyone is different
The differences- but not treat us like a separate entity
Normalising our minds rather than pathologizing them because they differ from the statistical societal norm
If you could design one event, campaign or activity what would it be?
To highlight all of the human achievements that autistic and ADHD minds have contributed to society over the decades
Adaptions and solutions to help autistic people
I would love a functioning autism for adults’ group. My time in this current group makes me feel less alone
Could we support you?
If you are awaiting a diagnosis of autism, or ADHD – or are newly diagnosed – and live in Gateshead support from our Triple A programme could be right for you. Learn more and self-refer-or refer on behalf of another here.
If you are awaiting a diagnosis of autism on the CNTW pathway and live in Northumberland, we’re here to support you with our Autistic Adult Support Programme. Learn more and self-refer- or refer on behalf of another here.
We are here to support the mental health of all local people. If we do not have a support service for you we can help signpost to another. Email admin@tynesidemind.org.uk
Need some support? We are here, to talk, to listen, to support YOU. Our Support Line is available Monday-Friday 2pm-10pm and Saturday-Sunday 12pm-8pm.
Call now at 0191 477 4545 or 0330 174 3174 (Calls are charged at a local rate).
(Pictured right: Fidget Toys ED Printed by Gateshead Triple A member)
