by Monique Craine
I thought I should draw up some basic guidelines which I have found to be commonly desired by members of the autistic community.
Please follow these ten guidelines if you want your awareness campaign to gain the support of the #ActuallyAutistic community
1 - Do not allow Autism Awareness Month to be about pity and/or fear of autism. Autism awareness is not about increasing parents and professionals interpretations and views of Autism. It is about increasing awareness of 'Autism' itself. The #ActuallyAutistic adults who have a lived experience of autistic differences are the true experts and are the best people to help raise real awareness.
2 - Do give autistic adults a platform to express their experiences of the kinds of barriers autistic individuals are likely to face. Allow the autistic community to present the messages they want going out for autism awareness so that autistic individuals are allowed to embrace our different neurology. Do not use our need to be heard as a means to exploiting autistic talent to raise funds for your 'autism' causes. Value their contribution as you would any professional, especially if you are using their talents to make money.
3 - Do NOT Light it up Blue for autism. The Autistic community do NOT generally speaking support Autism Speaks. To many of us they are no more than a well funded HATE group working to eradicate us from the gene pool. Lighting it up Blue is an affront to many #ActuallyAutistic individuals. We tend to prefer GOLD as it is our Au symbol of acceptance. If you have to light it up then any colour other than blue will do. There is a whole spectrum to choose from
4 - Do talk about how our different neurology impacts our ability to function to societies expectations and be a true ally in helping us get the kind of accommodations autistic people are telling you they need. We are being failed in all settings; from schooling to our mortality rates. We need people to know how to better accommodate our needs so that we can live more productive and healthy lives. Use this time to tell society how they can better account for our different needs.
5 - When responding to computer literate autistic adults do not compare the Autistic adults to your Autistic 'children' no matter how severely the child is impacted, no one actually knows what that child will achieve by the time they are the adults age, and the person you are talking to may have presented just as severely at the child's age.
*No one ever compares non-autistic adults to children it is rude and dismissive of our lived experience of autism and anyway, unless you're our actual mums don't assume you know anything about our childhood.
6 - Do NOT talk about autism as though it is an unsolvable mystery or a puzzle piece, as that implies we are a lost cause, or missing part of the big picture. In our eyes the only piece missing is that we are not valued and accepted for who we are by society. In view of this never put an assumed monetary cost on an individual who has not had their needs met. When society INVESTS in the autistic community the costs of 'autism' will fall. No other groups of disadvantaged, marginalised citizens are generally discussed in terms of costs, well what can we say? Just STOP doing it please. You should not put a value on our lives just because we happen to be autistic.
7 - Do NOT talk about 'fixing', 'treating' or 'curing' AUTISM. There is NO cure for Autism and we don't want to be 'treated' for our autism by people who obviously do not understand how our different neurology actually impacts us. Autism is an integral part of each and every autistic individual. Our autism cannot be removed without destroying the thing that makes us who we are. So when you 'fight' or try to 'beat' Autism you are perceived as aggressively wanting to harm us. We ARE autistic and want to be able to discuss our different neurology without judgement from people who want to destroy part of it.
8 - Do not grant a platform for the promotion of Applied Behavioural Analysis (ABA), it is NOT a treatment for autism which is recommended by anyone other than Behaviourists. ABA is a profit making enterprise, preying on vulnerable parents who we want to protect. Many of the autistic community view ABA in the same way as the homosexual community and their supporters view 'Gay Conversion Therapy. Please don't endorse it this Behavioural approach if you want our support. We can help you find more respectful ways to help your child progress.
9 - Do not allow a platform for the anti-vaccine movement, and alternative medicine quacks. There is no 'alternative' to real medicine and there is no link between autism and vaccines so your choice is simple. Either you are promoting pseudoscience, quackery and unregulated experimentation on autistic children, and adults OR you support autistic people. It's as simple as that.
10 - Do NOT confuse autism with the other commonly co-occurring neurological differences like dyspraxia, epilepsy, OCD, ADHD, etc. Autism is a benign neurological difference which is not responsible for everything autistic people can struggle with. What people actually need is more knowledge about commonly overlapping and co-occurring Neurodivergent differences. Autism is just autism, it does not make you Learning Disabled, in fact many of us have high IQs. Autism does NOT cause seizures, that is epilepsy and does need to be medically monitored and in many cases medicated. All autistic people are different because of how our complex ND natures interact with our other co-occurring differences.
I would like to ask that all who support these guidelines please add their voice to this thread so that come April 2018 we can request organisations light it up GOLD for Au acceptance and with our full support and cooperation. Please let society see that the autistic community speak with a pretty united voice.
We can re-appropriate Autism Awareness to something #ActuallyAutistic people can support and celebrate.
Autistic UK campaigns in the UK and beyond to advance the interests of all autistic people and those with “related neuro-developmental conditions”.
Autistic UK will work to ensure that the autistic population of the UK is comprised of happy, healthy, fulfilled and empowered individuals.
Autistic UK envisages:- The establishment of Autistic People’s Organisations (APOs) within every local authority area in the UK