Happy #WorldAutismAwarenessDay everyone, it's Alex here. I woke up this morning and thought to myself, "It's that time of the year again", which means that for one month my Social Media feeds will be awash with #AutismAwareness and #LightItUpBlue (eugh!). But rather than feel disparaged at the prospect of 30 days' worth of well-meant mistargeted propaganda which will ultimately be forgotten by many, I'm going to focus on moving away from Autism Awareness and towards #AutismAcceptance. Consequently, here are 5 ways which I believe/hope could enable the world at large to move forward.
1) Realise that Autism is more common than you think
Autism is continuing to gain prevalence in this increasingly chaotic world. In the UK there are estimated to be just over 1 in a 100 autistic people, but the number of autistic children living in the US has increased to around 1 in 59 according to the CDC. I believe that the prevalence of Autism is actually greater than either of these statistics indicate. Whilst diagnostic criteria has broadened, there are still many successful autistic people who will not qualify for a diagnosis because they are exactly that (i.e. successful). When one considers that it can take in excess of three years to actually be assessed for a diagnosis then this, too, would indicate that the current service provision is not enough to meet the rising autistic population. Autism also often presents differently in women (men are four times more likely to be diagnosed), which also needs to be addressed.
2) Accept that you cannot cure Autism
Whether one likes it, or not, Autism is a lifelong neurodevelopmental condition (and in some cases disability, depending on one's outlook), the impact of which varies between person to person and from moment to moment; some days I can get a lot done, others next to nothing (today I'm persevering). Don't get me wrong, life can be difficult for autistic people and those who live with them, and there are many less than charitable people /organisations who will look to capitalise on the vulnerability of the autistic community, sometimes with dire consequences. That said there are resources for autistic people living in West Sussex to use, some of them free, a list of which can be found here. One word of advice: it pays to be cynical when choosing which services/therapies/interventions to try; do your research and, if in doubt, ask an #ActuallyAutistic person who has used them to gain some insight.
3) Remember that we are different, not less
The online Autism community can be a pretty fractious realm rife with intolerance and egos; debates are frequent, misunderstandings/wilful ignorance of different view points more so. Anyone who's had the "benefit" of either observing/receiving the outcomes of Aspie Clash (where two autistic people argue and won't back down until one blocks the other, think of the old Rocky films and won't go too far wrong) will (I should like to think) agree with this. It's not just autistic people arguing, however. The stakeholders of this community also include parents, carers and family members of autistic people, professionals whom work alongside autistic people; the list goes on. Unfortunately, it would appear that some of these people seem more intent on hastily sharing their views and protect their own interests, rather than taking the time to understand those of others. Personally, I don't post much on social media; it's too easy to inflame a situation with a few keystrokes/finger taps, especially when angry, and it's sometimes difficult for me to understand the tone and content of the message(s) portrayed. Once I've taken the time to "understand" what is being said, I either don't have the energy or the will (or both) to engage, so I don't. I do realise, however, that everyone is entitled to an opinion - that they all have thoughts and feelings which may differ from my own - and that I should do my best to recognise and respect that.
4) Co-production is the way forward
Co-production is a bit of a buzzword at the moment, and rightly so. For years, the Autism community has flocked to hear the words of the experts - psychologists, psychiatrists, and other professionals - in the hope of finding help. Gradually, the parents of autistic children began to share their own expertise and colluded with some of the aforementioned professionals to form organisations with a common goal, most notably the National Autistic Society here in the UK. Since then, a number of autistic adults, many of whom have experienced the expertise of both their parents and professionals, are now in a position to share their experiences. There are a number of autistic adults doing just that - giving talks at national conferences, taking part in research - most of whom are not paid. Whilst I accept that funding is scarce and that the economic outlook looks, at best, uncertain (*cough* Brexit *cough*), I find it deeply ironic when we're expected to change our routines, take the time to prepare what we want to say, prepare for our journey, and then execute what we've been asked to do (all of which can be difficult for autistic people) all for nothing in return. We are different, not less, and should be paid accordingly.
5) Never stop learning
Finally, I think it's important that everyone continues to learn about autism, whether it's by following (and unfollowing) people on social media, reading books/journals, or attending conferences. If you want to hear what it's like to be autistic from someone IRL (in real life) then you could always come to one our training sessions. Follow us on social media, look at our home page, or contact us for more information.