Advent 4: “Your child is different…”

I write a lot about the positives of autism, about the fact that autistics are everywhere, that we’re not something (all that) weird, and that we can be successful professionals and leaders. But I’d like to counterbalance that a bit by drawing attention to the challenges for the parents of autistic children and the families of autistic adults. Having a disabled person in your family is often going to be a blessing, but it may not be what you expected, and it may ask more of you than you thought you could give. Some autistic kids don’t get diagnosed until teenage or later because they mostly mask and fit in – others are picked up very early on because they have high support needs or because their behaviours present a lot of challenges. In either case the parents are going to have a lot to deal with – perhaps the child having meltdowns after school from masking all day, or struggles through local education systems to access the right support package. Being told that adult autistics sometimes succeed and want to celebrate autistic identity may offer hope for the future, but I imagine it doesn’t make the parents’ lives much easier in the short term.

O Oriens: The darkness of shame

It’s the shortest day and the longest night of the year and the darkness feels like it can become overwhelming. In spite of some issues with light, I can feel my mood dip when the darkness comes, the days shorten and the sun is low in the sky. It’s hard to feel cheerful when all around you is grey and cold: the natural world that usually gives you a lift dying away for winter. I know I’m getting down when the shame of how my life didn’t turn out how I’d imagined in childhood gets to me. I have a lifetime’s worth of internalised ableist beliefs lurking in my mind and this is the kind of time when they come to the surface. I want to say something about this internalised shame because I associated it both literally and metaphorically with the darkness, and also because the harm it does is so widespread.
Only this morning I was talking to a contact about their teenaged offspring who may or may not be autistic. I was attempting to be helpful about how the diagnosis process works. But what struck me was that the teenager themself was very resistant to the idea that they might be neurodivergent because there was “nothing wrong” with them. Even though they knew they sometimes needed (and wanted) help, the stigma of the label “autism” was intolerable to them. And this was a young person born in the 21st century and living in a generation that is more literate in inclusion and neurodiversity than any before it.

Advent 3: “A voice crying in the wilderness…”

An autistic person can sometimes feel like “a voice crying in the wilderness,” which is a poetical description from the Bible, trying to get others to hear an uncomfortable message about the need for change. We’re likely the person who names the uncomfortable truth others are dancing around, or points out the elephant in the room. The Bible passage goes on to talk about making a straight road and getting rid of crooked things – which resonates with the autistic desire to make things clear, plain and logical. Why does the world have to be so bendy and crooked, skirting round feelings and illogic with hints and unspoken meanings? This post is being published on the Third Sunday in Advent – there are four Sundays in Advent, each of which is linked in the Anglican Church to a particular part of the Christian Story that led up to the birth of Christ at Christmas. This week’s theme is John the Baptist, a prophet who foretold Christ’s ministry, adopted the description “a voice crying in the wilderness” as his strap line, and indulged in a fair amount of plain speaking. He also wore camel hair clothing, ate locusts, and got his head chopped off, but we’ll gloss over that.

Advent 2: Knowing the future

Facing the uncertain future needs confidence that things are OK and will remain OK. That’s not always the case and if your life is really difficult you may not be able to cope with even slight uncertainty as to what’s going to happen next. A little change could be the straw that breaks the camel’s back. But hope has to be the way to live, when mental health permits. Hope of eternal joy, or just hope of not making a prat of yourself at work – hope is the message of the season.

Advent 1: Autism and the ancestors

I’m a Christian and this post is being published on the First Sunday in Advent – the beginning of the church season that leads up to Christmas. The first Sunday is when my church remembers the Patriarchs. That’s not patriarchs as in the patriarchy particularly – it’s more about deep roots and family. So it’s a good opportunity to talk about the family heritage that many autistic people have.
I hope we’re in a transition phase; today’s children tend to have a diagnosis but today’s parents seldom have. That won’t happen in the next generation – diagnosed parents will be the norm as today’s children grow up and have children of their own. Those diagnosed parents will be able to role model how to live a successful autistic life to their autistic children. There’s every reason to think autism has always been with us and always will be – but the next generation will do better than my generation. Society may be at a turning point where the darkness of fear and ignorance changes towards the light of knowledge and acceptance. And if that isn’t a suitable message for the start of Advent, I don’t know what is…

“Fear not…”

I know we autistics can be off-putting – we might be fidgeting, blunt, picky, or deep in some obsession that appears to make no sense. If you have an autistic person in your family, you might be rightly nervous that they are going to spend the entire day telling you endless pointless facts about trains, dinosaurs, a TV show you’ve never seen or a video game you’ve never played. Yes, that may happen. Sorry. But while we may be irritating, please don’t be afraid of us. We autistics are people too. Reach out and you might find that we’re actually easier to get along with than you thought. Or if not, perhaps sit with us in silence while we both indulge some interest online or reading? Christmas Eve has to be the time to put away fear…

“Different is unfair”

“She performed equally well in the interview, but she had some reasonable adjustments.” That’s a piece of feedback I once received (not from an organisation I’ve ever worked for!) indicating that some people regard the reasonable adjustments for disability as an unfair advantage. Two candidates performed equally well but the non-disabled one got the job because the accommodations for the other’s disability were seen as unjust. This is not at all how it’s supposed to be, but it’s a sloppy thinking pattern that it’s all too easy to fall into. One person got some extra help, so they should be able to perform even better, right?! No. The point of reasonable adjustments is to reduce the disadvantage caused by someone’s disability, not to give them special treatment.

Bringing people together

“So what you want is a separate course for autistic people?” That’s what a lecturer on management and leadership from a UK university said to me when I pointed out the ways in which some of the academic discourse in their area was biased against autistics. I explained that no, I wasn’t arguing for segregation, I was arguing for teaching what needed to be achieved (the outcome) rather than the way of achieving it (the process). It was perfectly possible to make management and leadership training inclusive of autistic people if you said that (for example) “the aim is to get staff to trust you” rather than “you must make eye contact so that staff trust you”. (Autistics tend to find eye contact painful.) For comparison, consider a leadership course that said “you must demonstrate energy and enthusiasm by running up to the podium to speak” – not very inclusive to people who can’t walk is it? Much better to say: “demonstrate energy and enthusiasm to your staff”.

The deeper point though was that I was horrified that this well-intentioned, intelligent person’s first response to suggesting inclusiveness was to offer segregation. I certainly like to be with autistic people some of the time – we seem to instinctively “get” each other in a way we don’t with neurotypical people – but I don’t want to live in an autistic ghetto. Suggesting that autistic people need to only be with each other (and kept away from neurotypical people) is a terrible idea. Humanity is hugely varied and the way we are maximally effective at problem solving is by embracing that diversity of thought, rather than sticking to people who are like us.

The darkness of shame

It’s the shortest day and the longest night of the year and the darkness feels like it can become overwhelming. In spite of some issues with light, I can feel my mood dip when the darkness comes, the days shorten and the sun is low in the sky. It’s hard to feel cheerful when all around you is grey and cold: the natural world that usually gives you a lift dying away for winter. I know I’m getting down when the shame of how my life didn’t turn out how I’d imagined in childhood gets to me. I have a lifetime’s worth of internalised ableist beliefs lurking in my mind and this is the kind of time when they come to the surface. I want to say something about this internalised shame because I associated it both literally and metaphorically with the darkness, and also because the harm it does is so widespread.
Only this morning I was talking to a contact about their teenaged offspring who may or may not be autistic. I was attempting to be helpful about how the diagnosis process works. But what struck me was that the teenager themself was very resistant to the idea that they might be neurodivergent because there was “nothing wrong” with them. Even though they knew they sometimes needed (and wanted) help, the stigma of the label “autism” was intolerable to them. And this was a young person born in the 21st century and living in a generation that is more literate in inclusion and neurodiversity than any before it.

Home is a sanctuary

Being on your own at home makes you a sad act, right? Particularly at this time of year, what you’re supposed to be doing is being out at parties, bars and clubs, socialising and indulging in festive togetherness. So home alone is a state of last resort, surely? Well no. For many autistic people home is a sanctuary where we can control the environment. It’s well known that extroverts get energy from other people, and introverts from within. But my experience of autism is that I need alone time not only to get energy, but also resilience, joy, peace, and many of the other positive things in life. For me being alone and focussed on a special interest can be the highest form of happiness, not some kind of second best.