Back in January 2015, after a three and a half year wait, I was diagnosed with Aspergers syndrome (which is now recognised as Autism Spectrum Disorder).
A label like this doesn’t change anything, and yet it changes everything.
It’s just a word to describe people like me, but as soon as you say ‘I’m autistic’ out loud, it alters the way people behave towards you.
The awareness – how others see me – is why I, as an autistic person, will not be supporting Autism Awareness Week.
Since the diagnostic criteria for the condition was created, autism has always been viewed as a ‘problem’ – something to be ashamed of, to be kept quiet, something to be ‘cured’.
These days, the re-emergence of the (debunked) theory about vaccines has reared its head again. Harmful tropes surrounding autism and autistic individuals have also become something that is ‘normalised’ and disseminated openly on social media.
And the same attitudes of shame and secrecy, the need to ostensibly ‘cure’, have become almost mainstream.
This is offensive to me – I am not broken, nor a missing puzzle piece, vaccine damaged or injured. I am a whole human being, just like everyone else.
Once I was diagnosed, I became aware of how people reacted to me.
I would lose friends, teachers seemed afraid of me at times, and occasionally, would act in an obstructive manner.
Voices were altered to be calming, level and therefore patronising, because autism apparently means that I am either hard of hearing or too slow to comprehend what constitutes a ‘normal’ conversation.
One teacher made a reference to people with Aspergers syndrome as being ‘a bit cold and a bit weird’.
A relative would regularly rant in front of me, because I had received the MMR vaccine. According to this family member, I had ‘changed’ afterwards, and that was clearly because I was autistic.
Due to a lack of eye contact, I was also told I was a ‘liar’ – because this is apparently indicative of guilt.
While being tested for hypermobillity, despite expressing I was in pain, I was told I could clearly move my joints more.
I am either too empathetic or not empathetic enough; in newsrooms, where I have worked as a journalist, anything vaguely to do with diversity has often been passed to me.
When stimming on trains – a symptom of autism also known as self-stimulatory behaviour – due to distress at the overwhelming sounds, I have been laughed at.
People have also ‘outed’ me, before I was ready to share my diagnosis.
My list of issues like these goes on.
Awareness does not automatically lead to acceptance, but not challenging harmful tropes and ideas can lead to harmful incidents.
If you ask an autistic person about their experience, they may well say something similar. There is a lot of anecdotal evidence and case studies are regularly shared across Twitter under #ActuallyAutistic.
When interviewing an autistic friend who runs a comedy night, she expressed to me that awareness without acceptance seems ‘pretty pointless’.
A survey run by the National Autistic Society through YouGov indicated that 99.5 per cent of the public in the UK have heard of autism.
In contrast this to, only 16 per cent of autistic people and their families believe the public understand autism in a meaningful way.
The complete report, released in 2016, also indicated that 50 per cent of autistic people and their families do not go out sometimes, due to worries of how people will react.
And 74 per cent of the families in this report said people either tut or make disapproving noises about behaviour associated with their child’s autism.
What is the point of raising awareness when most of us know what autism is?
Awareness does not automatically lead to acceptance, but not challenging harmful tropes and ideas can lead to harmful incidents.
Campaigner Emma Dalmayne has been tireless in raising awareness of Miracle Mineral Solutions, a dangerous supplement sold online to ‘cure’ children of their autism.
Yet there isn’t anything in place to prevent this.
In the last week, the Advertising Standards Agency has announced it will be cracking down on the advertisement of these fake ‘cures’.
While this is a much-needed measure, legislation still needs to be in place as a strong deterrent for something so abhorrent.
Even the National Autistic Society made headlines recently, for mistreatment of people at one of its care centres.
If you look closely, there are stories of charities who undertake controversial stunts, such as the ‘Light It Up Blue’ campaign, which Violet Fenn – a fellow writer who has autism herself – said she would ‘never’ take part in because autism doesn’t need a cure.
The ‘pity these poor people’ approach does not work and is archaic beyond belief.
Instead, charities should promote acceptance.
Autistic people need to be valued as much as anyone who is considered ‘normal’.
This can be done by reading up about the hallmarks, but also by knowing that it’s a spectrum disorder – if you meet one person with autism, you have not met all people with autism. We are not all the same.
Offering support when needed – such as if extra help is required in schools – is also great, as well as making provisions wide-ranging and easily accessible.
Autism Awareness should be renamed Autism Acceptance, regardless of whether it applies to the day, week, or month.
Research about ‘cures’ needs to be stopped and various organisations need to listen, rather than push their ideas forward.
And if you know someone who is autistic, be an ally for them – knowing I had a friend who accepted me as I am made all the difference.
Lydia Wilkins is a freelance, NCTJ qualified journalist. She documents her life as an autistic female on her blog, Mademoiselle Women.
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