When awareness isn’t enough: shifting the focus to understanding and acceptance (and why you shouldn’t support Autism Speaks)

Lizzie Arnold

If you asked the average person what autism looks like, nowadays they would probably have a vague idea. It hasn’t always been this way – until very recently, autism awareness was incredibly limited. There is now increasing awareness of the condition’s prevalence – around 1 in 100 of us are estimated to have it – as well as the fact that it is not exclusive to males, despite previous long standing assumptions. Despite this, there is still misinformation surrounding the condition today, a lot of which has arguably been exacerbated by the rise in discussions on autism facilitated by the increased awareness of it.

As is the norm for minority groups, misrepresentation in the media contributes to misinformation about autism – particularly as it is often only represented in male figures; perpetuating the stereotype that only men can be autistic. The acknowledgment that autism is not gender-exclusive is still relatively new, a view point which can be seen in the medical community, hitting women and NB individuals hard when there is a late diagnosis of the condition. This leads to very long, unnecessary delays to the support that so many autistics need. (My experience is typical of other autistic females: it took 19 years to be diagnosed.) This in turn often leads to the development of mental health issues from an inability to cope. It is currently estimated that *at least* 1 in 3 autistic adults have severe mental health issues; I would posit that these unnecessary delays in diagnoses play a large part in this problem.

Additionally, there is the ‘tragedy narrative’ that is still pervasive in discussions around autism – the idea that autism is a disease, that it destroys families, that beneath the ‘autistic shell’ a ‘normal, beautiful child’ is ‘trapped’; the organisation ‘Autism Speaks’ is a major perpetrator of many of these harmful ideas. For many years it has made clear its aims to ‘cure’ autism, despite huge outcry from the autistic community that we don’t want to be ‘cured’; their latest mission statement omits this, although I am doubtful as to how radical a change this organisation is capable of, considering its track history. It has used its funds to spread harmful material using scare tactics to try and present autistic children as burdens, as marriage-breakers, even going so far as to say that a family “is not living” if it has an autistic child.[1] It has advocated for prevention of autism, using yet more of their funds on research in areas such as eugenics to find a ‘solution’ and promoting anti-vaccination programmes (again proof of how far removed the organisation is from the established medical community). It refuses to listen to the community that it claims to ‘speak’ for, ignoring the multitudes of us who voice our distress and anger at their practices, while continuing to exploit the tragedy narrative from which it profits. Let’s get one thing straight: autism is not a tragedy, it’s a condition that is integral to who we are – and although it can cause difficulties for the individual, a lot of the time this is due to lack of support stemming from a widespread lack of awareness. This naturally leaves little space for many of us to cope, let alone thrive. Furthermore, not every autistic person even experiences autism as disabling – I have autistic friends that do not identify as ‘disabled’ or need help at all. Autism Speaks is one of the major sources of misinformation on autism to this day: when researching the topic I am often angered to find that articles from the website dominate the first page of results and beyond.

Autistic people need to be supported when appropriate but ultimately allowed to be autistic, represented fairly and accurately, and listened to as complete human beings whose voices do not need to be ‘fixed’ or ‘silenced’ but championed in conversations surrounding autism and beyond. This is one of the main aims of my society, FXpectrUm: to support young local autistics, to raise awareness of autism and bust any myths surrounding it, and advocate for improving how autistic people are treated, striving for deeper acceptance of our condition.

FXpectrUm is a society for those interested in, diagnosed with, or self-diagnosed with autistic spectrum disorder. We aim to change the stigma around the condition through educating the public, as well as creating a fun and accepting environment to come and be yourself! We meet up every other Wednesday at 5-7pm in the Peter Lanyon Staff Room, where we chat and play card games and decide what we do for the next Wednesday – which is usually going out to Falmouth for meals, film nights and drinks. Everything is relaxed, inclusive and supportive! You can find us on facebook – https://www.facebook.com/FXpectrUm/ for our page, and https://www.facebook.com/groups/fxpectrum/ for our group – or email us at fxpectrum.as@gmail.com

[1] http://ownshrink.com/neurodiversity/autism-speaks-genocide-for-personal-gain/