• Tag Archives awareness
  • Breaking News: Another allistic celebrity is doing a TV programme about autism!

    Recently the internet has been awash with praise and adulation for ‘brave’ Paddy McGuinness and his wife Christine since they announced their documentary about ‘being a [parent] to children with autism*.’ This has followed Paddy’s appearance on John Bishop: In Conversation With… in which (from what I’ve seen in clips posted to Facebook and feedback in the comments threads) he cries and waxes lyrical about how hard it is to ‘have two children with autism’ and ‘the fear that the youngest has autism too.’

    It’s only a matter of time before I start being asked , what I think of it, or if I’m excited, but to be honest I just feel dread in the pit of my stomach mixed with a smidgen of nausea. Autism has become another commodity: the en vogue tragedy for celebrities to cash in on and it’s really uncomfortable to see. Before you cry out ‘but he’s raising awareness and is brilliant for it’ stop and read the rest of this post explaining why this sort of ‘awareness’ is incredibly damaging to the autistic community:

     

    The wrong voices are being elevated

    It’s the age-old problem faced by the autistic community: parents’ voices are raised higher and higher; they are the faces of awareness campaigns and are touted as the oracles of autism knowledge to whom new ‘autism parents’ are sent on their information gathering pilgrimages. Whilst there are a number of autistic speakers, there are very few autistic speakers who are also parents to autistic children,  who are (probably) the best placed people to speak about a range of topics relating to autism and its co- occurring conditions.

    When autistic people do speak out, particularly regarding their pride about being neurodiverse, they’re quashed by the ‘autism parents’ whose chants include ‘you’re not autistic like my child, you have no right to speak for them’ and ‘you’re not autistic’ and ‘you don’t know anything about us’ followed by a sweeping statement about the autistic person implying they know everything about them based on a single (usually online) interaction. I’m not entirely sure they see the irony of elevating their non-autistic parent voices above those autistic people’s who they claim aren’t autistic enough, but there you go. The reason they tend to elevate other allistic parents’ above autistic voices leads me into the next point…

     

     

    It’s always negative

    Okay, always may be a bit hyperbolic, but not much. The voices being lauded are bellowing out about how hard autism is, how it ruins lives, how they wouldn’t wish it on anyone. That alone is enough to make even this emetophobe want to vomit, but what’s worse is they’re not even talking about the autistic person in these cases; they’re talking about themselves! The parents! Autism is hard for them, their lives are ruined, the child they imagined having was ‘stolen by autism.’ There is seemingly no consideration for the autistic person themselves who may, in fact, be completely happy with their lot. Or perhaps they are struggling with co-occurring conditions such as anxiety, depression, or learning disabilities, but that doesn’t make the autistic life any less valid or valuable, and it certainly doesn’t give their family permission to publicly cry ‘woe is me’ in order to gain fame, money, validation, or all three.

     

    It’s not accurate

    Many of the ‘autism parents’ are so wrapped up in their version of what autism is, they forgot to find out what the objective reality is. It’s a life-long neurodevelopmental condition affecting social communication. The most common traits include a need for routine and stability, sensory processing differences (although this isn’t a diagnostic criteria), social communication difficulties (with many autistic people having speech and language delays), and difficulties with executive function. Autism isn’t a learning disability (although there are lots of autistic people who also have a learning disability), it’s not something you grow out of, and it’s certainly not caused by vaccinations (I actually can’t believe I still have to write that one). Functioning labels have never been part of the diagnostic process, and the reason that support levels have been introduced in the DSM-5 is to easily identify those who have significant disability caused by another condition the person has, e.g. a learning disability.

    Repeat after me:

    Verbal ability and intelligence do not mean that an autistic person has it easy and is just ‘quirky’.

    Non-verbal certainly doesn’t mean unintelligent or uncommunicative.

    Learning disability doesn’t mean unhappy and worthless.

    Going back to ‘you’re not autistic enough’ and the other tripe spouted by ‘autism parents’ online and in articles: just because someone can write a blog post or compose a tweet, it doesn’t mean they are less autistic. It doesn’t work like that! In fact, if you insist on using an arbitrary scale of ‘autisticness’ with only the non-verbal autistics having a valid diagnosis, you should know that many of those tweets and blog posts come from non-verbal autistic adults (and probably should let psychiatrists, paediatricians and professors know that you can diagnose, or more specifically remove their diagnosis, based on a single online interaction as you’ll save them a lot of time and money; you must be so smart!)

     

    There are a host of other reasons I feel uncomfortable with the current ‘awareness’ shows and campaigns, but the three points I’ve covered are the main ones. Instead of yet another celebrity talking about how hard their life is because they have autistic children, or an infographic written by Autism Mom 37 about how vaccines stole her child and the only way to cure them is to shove bleach up their backsides while removing all gluten and casein from their diets, why not have a television programme about a family where all members are autistic? Show the highs and the lows (I’m not going to pretend it’s all sunshine and rainbows, but at least listen to why it’s not from an actually autistic person); capture the joy of a family stimming together while sharing their special interests; portray the difficulties faced when all members have sensory differences that clash, and the ingenious ways they get around that; show real life as an autistic person, and stop lifting up the wrong voices. And for the umpteenth time: please call us autistic, we don’t carry autism with us and we’re pretty fed up of having to ask you to use the correct language.

     

    Autistics all have a voice, are you willing to listen?

     

    *Deliberately used person first language here as this is how the programme is being described. It should have been the first alarm bell really.


  • World Autism Awareness Day 2018

     

    Today, for the first time in years, I wasn’t going to write anything. I have struggled to sympathise with the stories, people, organisations, and even myself, and found that during the build-up to today I had descended into negative thought patterns and self-pity, largely due to everything that’s going on in the land of social media. A day which has previously seen me shout from the rooftops about how autism affects my family and others I care about, has this year seen me confused, bitter, and disaffected by the whole damn circus.

    The day, it seems, has become a battle between two warring factions: autistic people, and everyone else. The war zone is made up of zeros and ones, and the weapons are razor-sharp words fired by frustration and hatred. If the pen is mightier than the sword, then words typed in comment threads are more explosive and destructive than an atomic bomb. As the fight continues about puzzle pieces, whose voice gets heard first, what colour we should ‘light it up’, and which came first, the person or the autism? people are missing the entire point of the day. There is still a horrific lack of services and understanding for autistic people; there is still a vast number of people who struggle to obtain an accurate diagnosis, particularly females and a-typically presenting children; people still truly believe that vaccinations cause autism; and the very real discrimination that autistic people face – in education, employment, mental health services, law enforcement etc – barely gets a mention.

    Don’t get me wrong, it’s not that I feel the people arguing against things like the puzzle piece don’t have a point, it’s that they (and I) have missed the bigger picture by focusing on that tiny element. It can make the campaign look like a bit of a joke, and often completely obliterates any positive messages we are trying to convey.

    We know that Autism Speaks is an evil corporation which is probably headed by a reincarnated Hitler, but not everyone does (yet). Yelling at a mum for using the AS Facebook profile frame when she’s asking the autistic community a valid question isn’t going to make her come back to us. It’s going to make her defensive, stick her middle finger up, and run into AS’s open arms before you can say ‘eugenics’. Perhaps it doesn’t matter if the information seeker has lit up blue, red, gold, or purple, as long as they are asking the right questions, and listening to our answers we will be moving towards our aim of autism acceptance. You can always tag on the end why lighting up blue isn’t helpful, and is certainly not what autistic people want.

    Yes the puzzle piece is a bit of a bullshit symbol, but telling people to actively avoid and decry any organisation or person who uses it, without looking to see what work they do and how they support autistic people and their families, is equally bullshit. Not everyone has the NAS budget to change all their branding overnight, ya know! People have different ideas of what the puzzle piece symbolises, and it seems to be quite different across the Atlantic divide. I know that it’s easy to assume the worst when you see it (and I do remind those around me why that is), but most people don’t have the same connotations with it as Autism Speaks. For some people and organisations it symbolises their desire to help autistics through the puzzle of the allistic world, and the idea that some use it to signify that autistic people have something missing is completely mind-blowing to them. This is where intent really does matter; perhaps establish that before embarking on your seek and destroy mission.

    Let’s be honest here, as much as I agree with, prefer, and use identity first language, as long as what’s being said before or after the ‘label’ is kind, helpful, and honest, does it really matter? Like *really really* matter? By all means reply to whatever is being asked/stated with “this is my constructive answer/response which adds something to the original point/question. Oh, by the way, autistic people prefer person first language because autism isn’t separate from us, and is part of our identity, just like someone is Welsh, not ‘with Welshness’.” Stop replying with “don’t help this person who’s trying to learn because they wrote words down the wrong way, and I don’t like it.” Of course people need to listen to autistic people more, including the way in which we like to be addressed. Perhaps they will start if we welcome them with the patience, kindness, and understanding we expect from them.

    Everyone please remember that parenting autistic children can be very hard. Vilifying desperate parents who just, for example, want to learn how to manage behaviour they find challenging is a dick move. Save that for the cure hunters, vaccine fear-mongers, and conversion therapy (read ABA) touts. Of course, if something that’s been said is hurtful you should point it out. But again, intent matters here and if someone doesn’t realise why what they’re saying is bad, don’t yell at them for it, explain (nicely) why, and they are more likely to remember it and not get defensive.

    The things I have highlighted are definitely important, but they are *not* more important than equal access to diagnosis, changing the education system so autistic children don’t end up refusing to go due to horrific anxiety, why functioning labels are unhelpful, and that autistic children become autistic adults. They’re not more important than pointing out the lack of services available to help autistic people (particularly in adulthood), that abuse of autistic children is excused in a way that would never happen with allistic ones, that there’s a huge number of autistic parents of autistic children (like me) who are doing the best they can in a system that’s not set up for them or their child(ren), and that there’s a fucking measles epidemic (again) because people wrongly think that vaccinations cause autism and autism is more scary than a child dying. Let’s focus on what’s really important here, and put in the other things as footnotes and addendums.

    Most of us have a limited amount of energy to devote to the cause. It’s exhausting, and we’re not even necessarily allocating that energy wisely. So maybe we can put down our weapons; use the rest of the week as an armistice. Lift up autistic voices, spread science not hate, and answer questions honestly and empathetically. Let’s educate, not berate. To those who say that people won’t learn or listen if we’re calm and nice about it think about this: that is what some people say about autistic children who are being failed by the education system. They say that the autistic children don’t listen, and the only way to teach them is to resort to extreme methods (again, read ABA). We all know that’s complete balogna, so why are we doing the same thing?  Yes there are loads of people yelling their anit-autism hate speeches and generally being douches, but they are mainly in their anti vaxx echo chambers, locked away where they belong. They may be publicising their locked-down chamber, but thankfully most people disagree with what they’re saying and are pretty vocal about it. Let’s not stoop to their level. We’re better than that; we’re autistic.