What is it like taking part in scientific research as an Autistic person?
Before looking into autism research, I never thought about how my trauma, pain and difficulties relate to my autism. I accepted myself, but I thought this trauma and pain were an inevitable part of the autistic experience. Through participating in research, watching lectures and reading journal articles on autism I've started thinking more about the sociological aspects of autism. Society is very centered around neurotypicals and how they perceive and interact with the world. I do not believe that this is intentional or malicious, but it does lead to a lot of issues within autistic communities ranging from bullying, unemployment, academic underperformance, homelessness and mental health difficulties. Being someone who first hand experienced being told I am not welcome in this world and feeling as though there is no space for me within society, I made friends with many autistic people who felt very similarly to me. This made me question "do things need to be this way?" Do autistic girls need to wait until things get to a breaking point before diagnosis? Do autistic children need to be bullied to the point where they suffer massive self-esteem issues? What would my life be like if I had been diagnosed earlier and received the love and support I deserved?
That is a question I cannot answer, but I believe that through collaboration between researchers, autistic people and autistic researchers we can ensure less autistic children feel like there is something wrong with them, that neurotypicals can learn to cooperate with us and vice versa. Autistic people are extremely diverse individuals with extremely diverse brains, from our birth we're told to conform and be sensitive around the needs and feelings of neurotypicals yet until recently, most understanding of autism focused on curing us, using behaviour therapies to change us instead of focusing on who we are and how neurodiversity is beautiful and helps society thrive. I believe that through understanding how our brains work we can not only understand more about ourselves, our strengths and weaknesses, but we can help neurotypicals understand and embrace us.
-Juju (they/them) UK
It was very tough to grow up undiagnosed as an autistic girl. Under-diagnosis is still a massive systemic problem for women and many others too. Lack of a diagnosis until adulthood is so much more than just a lack of much-needed support, it’s years and decades of living without a reason for why things are the way they are, not even having the tools to understand the world nor your place in it. Misunderstandings and misdirected blame hurt the most and they happen constantly.
The current stereotypes surrounding autism are damaging and prevent people like me getting support and diagnosis. Autism isn’t a linear progression from ‘severely autistic’ to ‘mildly autistic’. People have different difficulties and strengths in different areas. Just because I communicate by speaking, it doesn’t make me ‘less autistic’ or ‘better’ than someone who doesn’t. Just because I struggle a lot with change, it doesn’t make me any more autistic than someone who doesn’t. Functioning fluctuates and varies within the same person at different times too. Autism isn’t a disease, it’s just a neurotype. Autism doesn’t need curing, it’s society that needs to become more accepting and understanding. This is why I am trying to take part in as much research as possible. To attempt to increase understanding an acceptance about autistic people, and play my part in improving quality of life for the next generation of autistic children to come after me.
-Annabel (she/her), UK
Extremely satisfying, as I am keen to become involved with any form of research that is beneficial to the understanding and acceptance of autism and neurodiversity. Scientific research helps autistics like myself to better understand ourselves and each other and enriches the minds of neurotypicals to obtain greater knowledge of what it means to be autistic in the 21st Century.
I’m a late diagnosed autistic adult, with two autistic children. As both an autistic and a professional in the field of autism, I would be very interested in accessing the completed research once published.
-David (he/him), UK
I always felt I was different to other people but never quite understood or figured out why I was like that. I’ve never been officially diagnosed with autism. It was my wife who suggested it after our first child was diagnosed.
One of the struggles I’ve recently learnt through my autistic child is that sometimes, I’ll be asking my child a question and he’d give me an answer that I was not looking for. Having learnt that the question I put forward was not concise enough to receive the answer I was looking for.
Communication, whether that is being understood by others, or understanding others is something I now realise is a struggle for autistic people, I feel empowered by participating in research that looks to explore the lives and struggles of others in my situation as I feel there are many like me from the BME community that are undiagnosed, ignored and have their habits ridiculed.
I'm an autistic non-binary person who also has an Emotionally Unstable Personality Disorder (EUPD) diagnosis, with an educational background in humanities and social research. While often life is turbulent due to strong emotions within an often ableist world, feeling connected to the scientific community, and advancing understanding of my autistic siblings in life through joining research samples, is one of the deepest and most exquisite pleasures there is to offer. The tests put me in touch with my own strengths, and confront me with my own weaknesses across my spiky skill profile, and I take pride in getting through such (after I have fully recovered, of course!) These experiences also give me confidence in addressing those who misuse science to pursue conspiracist or pseudoscientific agendas, so as my understanding grows, the depth of mine others' ignorances become better mapped.
- Robin (he/they), UK