9th April 2019 • Emma Cooper
I am normally extremely organised and timely when it comes to writing my monthly column for My Family, Our Needs. Alas, this month, I’m a bit eleventh hour with it.
It’s Autism Awareness Month and that means many things for me. It means I’ll be booked up with more work this month than any other month in the year. It means that Twitter, Facebook and the like will be exciting at best and overwhelming and disappointing at worst. It also means that people will be fighting over which jargon to use, the most appropriate colour schemes and which charities to support (or avoid like the plague).
If this is your first experience of being a parent to an autistic child during Autism Awareness Month you quite rightly want to participate and reach out to others on social media; reshare posts, memes and images from charities, organisations and advocates. A huge leap from discreetly sharing the new diagnosis with friends and family online.
So you share a post and then hold your breath as all your uni mates, old school friends, work colleagues and the like read it and you are then told by autistic adults that the slogan/post/meme or charity is ableist, or that they are offended, disappointed and hurt you would back a certain organisation or ideology.
This can be confusing, and it takes a great deal of courage the first time as a parent to speak online about autism in your family; particularly as we know autism is likely to be genetic.
So why the politics?
This is now my 37th year of being autistic and my 17th year of raising autistic daughters but only my 11th year of celebrating Autism Awareness Month. In that time, I have seen the very best and the very worst of autism online.
So, I thought in the whirlwind of it all, I’d write an (at the time of publishing!) up-to-date rough guide of the do’s and don’ts of online activity in April for autism.
- ‘Light it up Blue.’
I’ve shared this myself before in the early years. It seemed like a popular online slogan, normally a blue light bulb or jigsaw piece. Sadly, upon closer inspection, it leads to a US based charity seeking cures for autism, promoting films about how autism is an epidemic and, according to many campaigners looking into the numbers, apparently not much of the donations go to helping autistic people in real time.
- Share a charity appeal without research.
Charities are phenomenal things. Good, ethical charities are there to ensure no-one is left behind. However, some charities may not align with what you as a parent agree with, or even what may be best for your child in the long-term. So, it’s wise to see where their donations go and what their ideology is before sharing their posts.
- Share posts about cures for autism
Autism has no cure and does not need to be cured – END OF!
- Share posts about research for cause of autism
Millions of research money that could be better used on helping support autistic lives is wasted on trying to discover why we are here. Which screams Eugenics to me. The cause of autism is love and sexual intercourse between 2 people likely with autistic genetics in their combined families.
- Share posts about growing out of autism and ABA.
Autism is a lifelong condition, we do not grow out of it. Autistic people can mask their autism at a huge risk to their own wellbeing and mental health to fit in, but it doesn’t mean they should have to. Applied Behaviour Analysis (ABA) is a therapy used by adults on children to condition them to act less autistic. At best it may help your child to appear less autistic, at worst it’s been likened to dog training. It does, however, in all cases raise a concern as to how an autistic child learns body boundaries when being taught to comply by adults so young? Yes, we can learn techniques to come across less autistic in public, but again, why? What is so wrong with being authentically autistic?
- Use the terminology ‘with autism.’
Autistic people prefer the term ‘autistic person’ than to say we are ‘with autism.’ This, to us, suggests that it’s something we can choose to take with us, or not. Frankly, if I’m living with autism he can start paying towards the mortgage!
- Share posts encouraging infantilism of autistic adults and teens.
Many well-meaning people will share the video of the most popular girl in school asking the autistic lad to prom ‘despite’ his autism or because she’s just SO kind. Stop! This is what disabled adults describe as ‘inspiration porn.’ Disabled adults are attractive, desirable and great catches in their own right, we really don’t need the hottest girl or guy to validate our existence. We can date without the cameras on.
- As a disabled woman who, in the past, has had experience of dating stereotypically popular, attractive and well-known types who would only post photos of us together online if posed as a ‘what a great person’ they were rather than the fact we had a personal connection, I can tell you it really hurts. It leaves you wondering if people are embarrassed to be seen with you, that they don’t see you as a fully capable, consenting, intelligent, attractive adult, which of course we are.
On a positive note…
- Use Rainbow infinity signs (see Doodle Beth and autism Pride) or gold or red. All of these have been used and founded by autistic adults themselves (and are pretty!)
- Use terminology used by robust UK health professionals such as the NHS. For example, ‘autistic person.’
- Share posts about the positive employment of autistic adults by blue chip companies and Governments (where autism is seen as an asset not a burden). This is vital for several reasons; firstly charities sharing success stories of autistic adults can be rare. Frankly, who would donate money to a charity fronted by someone richer than the person donating? Pity is needed for donating. It’s only the very rare and progressive charities that highlight success stories. You need to look up individual autistic adults to see the wonderful outcome so many of us have.
- We also need you to support and show gratitude to employers employing us. Those like the Cabinet Office, Women and Equality, Ministry of Justice, Microsoft, Apple, GCHQ, Public appointments team and more who see our autistic minds as an asset not a burden.
Even now as an almost 37-year-old woman who owns her own home, has raised 3 children and is self-employed, I get calls from agencies who offer me the OPPORTUNITY to work for FREE as a favour to ME for them giving ‘an autistic adult’ a chance. Really.
My bills need paying more than your company needs to pretend to be inclusive! We need to value those who value us! Share their good work please!
Share posts by autistic adults over 18 about personal relationships, marriage, divorce, parenthood, employment – we DO grow up and, with your support, understanding, acceptance and respect we have got a lot to look forward to.
With all that in mind? Have a wonderful Autism Awareness Month… which should actually be Autism Acceptance Month.
See you in a much more relaxed May!