Truth. It matters: a campaign I wish wasn't necessary
Ella Pitt - our charity’s Campaigns Manager
Ella Pitt is our charity’s Campaigns Manager. In this blog, they reflect on the response to false claims by the US President about the causes of autism, the impact this has on autistic people and their families and the amazing response from the community to stand up to unscientific and offensive statements.
This week, I have been amazed by the powerful response to our Truth. It Matters campaign and the enormous 20,000 signatures our open letter received in just two days. This boost has helped me to have the energy to face the social media comments, the news and the heaviness of needing to launch a campaign like this in the first place.
When I started my role as Campaigns Manager at the National Autistic Society, it was because I wanted to campaign for autistic people to have access to the support they need and to fight against the barriers that stand in our way.
I didn’t think that I’d ever be sitting at my desk reading news stories about the President of the United States’ unscientific, scaremongering and offensive claims about the cause of autism, or planning how to launch an emergency campaign in response. In fact, I thought we’d moved past the point of spending so much time talking about causes or cures.
I thought we’d learned lessons from the huge amount of harm that false claims about the cause of autism have on autistic people and their families who are just trying to live their lives. I thought we could avoid the shame, the judgement and stigma this can spread.
Increasingly, though, what would have once felt absurd is becoming less and less surprising. Now, responding to such deeply offensive claims is just another part of my job.
I can’t imagine not being autistic, nor would I want to. However, reading news stories like this and the horrendous comments they provoke on social media leaves a lot of autistic people questioning:
‘What’s so wrong with being autistic?’ or ‘Why are so many people trying to figure out how to stop there being people like me?’
It’s important to acknowledge that being proud of being autistic and not wanting to change such an integral part of my identity is not the same as suggesting there are no challenges that come with being autistic. There are plenty, from the high likelihood of experiencing mental health conditions, high unemployment rates and the difficulties that so many autistic people face at school.
It’s also important to acknowledge that these challenges do not fall equally. False claims that suggest a parent could have prevented autism in their child may hit harder and have a more devastating impact in families where support needs are higher or remain unmet. Being autistic can also come with additional barriers for those who are marginalised for more than one aspect of their identity. Every autistic person should be given the space to have their own relationship with their identity and the experiences that come with it. We are not all the same, and we do not all feel the same.
However, what I really want people to understand is how many of these challenges could be improved by actually listening to autistic people about the support and adjustments we need, not endlessly fixating on whether we need to be cured or prevented.
In fact, I’d have much more time to talk about the actual change we need without being distracted by more baseless and dangerous claims.
Before my diagnosis, I experienced many challenges in many different areas of my life, but many of them have vastly improved by learning more about myself and my needs and surrounding myself with other people who understand them as well.
My overwhelming wish in response to these claims is not to be cured of autism, but for more people to realise we can have nuanced conversations about the autistic experience. We can acknowledge the barriers and challenges and need for change without wanting to eradicate autism.
And just to be clear one final time:
- paracetamol does NOT cause autism
- vaccines do NOT cause autism
- NOBODY is to blame for autism
- autism does NOT need a cure.