Friday 11 October 2019

Autism: Changing the Narrative

A mosaic bowl in which white cards have been placed, saying gentle, thoughtful, love, kindness, peace

It's been quite a journey away from tragedy-thinking, for me, and of course for so many others working in the autism industries.

For those looking for respectful and appropriate ways to aid autistic children, may I recommend the following approach: Change the narrative.

In other words, instead of seeing deficit, disorder, disaster, tragedy, fault, choose to see humanity, uniqueness.

Instead of seeing 'manipulation' by a child, choose to see a desperate attempt to meet a need.

Instead of seeing a deliberate attempt to 'get attention' by self-harm, choose to see distress behaviour as a possibility, and consider how to check for pain, illness, injury, sensory environment difficulties, fear, trauma, exhaustion, need for processing time.

Instead of seeing the 'fault' as being within the autistic child, choose to think about what of your own behaviour, your own approach, your own timing and expectations, *may* have led to a situation or made it worse.

Instead of seeing normalisation as a goal, choose to consider whether different is OK. Obviously keeping safety in mind, of course. Instead of seeing it as a battle to be won, choose to see it as a chance for both to learn together, to take time out to calm and re-centre.

Seek out autistic specialists who can work on sensory environment triggers that non-autistic people cannot always detect.

Seek out autistic trainers and their allies, working together to bring authentic first hand experience as well as knowledge.

Instead of believing that no autistic child can learn skills without crushing workloads from a particular team, assume competence. Believe they can learn in their own time, with the right support from the right professionals.

Instead of believing that autism equals low IQ, think about using different testing systems.

Instead of believing no verbal speech equal no abilities, think differently.

Most of all, be a role model for your fine young person. Be the ally they need. A friendly presence. A reassuring and calm personality. A gentle and considerate companion. And watch them thrive.

It took me a while to figure out. That's human nature, isn't it. We all learn.

I'm grateful for many individuals over many years, who have challenged, provided me with materials that have caused me to think and reflect.  And I am especially grateful for the narratives from individuals who have had treatments and therapies that have left them deeply damaged.  I very much hope that, together, we can all learn to do better.

Wednesday 9 October 2019

Autism: Why we need diversity in representation

A group of people of various ethnicies and genders

I'm not Black.
I try to be an ally, though. 
Why do I try to be an ally?  Partly because of watching too many of my colleagues, friends and customers from Black and Minority Ethnic* groups being treated poorly.  Being ignored. Being left out.  Being ostracised.  Being bullied.  Having to work harder every day than any person passing-as-white does. This and so many more problematic things they encounter daily.

I don't know what it's like to be Black.

Curiously, though, I know what it's like to experience some racial prejudice.

Have a look at my surname:  Memmott.

Most people guess (incorrectly) that it's Middle Eastern.  From that, they begin to guess that I'm married to someone from one of the Middle Eastern zone of countries, perhaps Muslim. Perhaps Jewish. That I must be of a different faith.  On a good day, I get people asking me if I'm OK to eat pork, or need a specific menu.  On a bad day, things get pretty bad.  I get outright hate from some, based on their misunderstanding and their prejudice.

As an experiment, we sent out a request for information to 25 different places. Twice.
The first 25 used my current surname.
The second 25, to the same people, used a different surname, one that is normally associated with being white British.

We received one response, when using the name Memmott.
We had a response from nearly every single one of those 25, using the allegedly-white-British surname.
We repeat that experiment sometimes.  The results are never very different.

We've also been running a 30 year experiment with restaurants.
Giving the name Memmott gets us a seat near the toilets on nearly every occasion.
Giving a surname arguably white-British gets us a good seat on nearly every occasion.

I don't think most people have any idea of the level of unconscious bias and/or outright prejudice out there.  Most people, when asked, would say 'of course we're not prejudiced - how absurd!'  But the unconscious bias thing is strong. 

Just a couple of examples.  But 30 years of experience of those misunderstandings is enough to give me a little insight. Not enough, no. Nothing at all like the lived experiences of those who are in the Black and Minority Ethnic communities every day of their lives.

Another example of unconscious bias, perhaps:  Our business (separate to my autism work) handles property valuation for a vast number of properties across the country.  Whilst many of our valuation customers and rival firms are superbly wonderful, some show some strange behaviour when asked to do work for BAME communities of any kind.  Generally, they try to give us the work, as they think we're Middle Eastern somehow.  Thus, we spend arguably a majority of our time valuing Temples, Mosques, Synagogues, & business premises of all kinds which are run by people of a vast number of ethnicities and backgrounds, nearly all Black or Asian.  It's been brilliant.  I won't say we are experts in everything, because there's always SO much more to learn.  But goodness me we have enjoyed 30 years of visiting and working with groups of all kinds, attempting to learn as much as we can, so that we can treat everyone with the honesty, integrity and fairness they deserve, and the respect they deserve.   We hear a lot of stories of how they are treated by a few other firms.  Not well.

It's a considerable Privilege to be able to give a different name and hope for the best, for sure.  Our Black friends and colleagues, for example,  don't get that option when they turn up and are greeted with surliness instead of friendliness.

So, it's up to people like me who have degrees of white-privilege to do what we can to boost the voices of those who don't. And to keep learning, keep challenging ourselves.  Keep challenging others.

Why is this important for autism?  Because of those myths that it's all about young white introverted boys.

People from minority ethnic groups are often denied diagnosis, because too many professionals aren't looking for autism in those groups.  Some think it's a white-people thing.  Especially true for older Black people, or Black females, for example, I believe, who are very rarely assumed to be autistic.

As a result, too many lovely people are left to flounder, unheard, and unrepresented.  Unresearched, unsupported.  Or given incorrect labels and diagnoses.

We can do better than this.  We must do better than this.

Find voices (by which I mean communication of all kinds) from people of all kinds.  On Twitter for example, you can try the hashtags #AutisticWhilstBlack #BlackAutistics #AutisticPOC or #BAMERAutistics 

Ensure your conferences have people from different minorities, different ethnicities, different backgrounds, wherever possible.

If you're a diagnostic professional, e.g. Psychiatrist, think laterally about people who visit for support.  Too many face misdiagnosis or lack of diagnosis because of that unconscious expectation that it cannot possibly be autism unless it's a young white boy.  Or, at best, a young white girl. may be a helpful starting point, showing the bias in the diagnostic criteria, for example.

Do I get being an ally right all the time?  Nope.  But goodness me, it's worth attempting.  And continuing to learn.

I have daily lived experience in several marginalised groups, only two of which involve me being 'out' in public. This post isn't about what happens when I disclose any of my own actual differences. They take up much of my time and energy every day, wading through LGBT+ prejudice, autism prejudice, etc...for me and for some of my family.    But having this surname has been such a 'wake-up call' to me about racism. 

Why not just change to a different surname?  Because I am fed up with a world that sometimes sees difference and wants to hate it, ignore it or exclude it.  Or which puts people who are different next to the toilets.  Really, really fed up.

None of us should have to hide, or fear.
All deserve equal respect.  Equal love.
All are of equal worth.

Thank you for reading.

*sometimes abbreviated to BAME