Monday 20 November 2017

Autism: About, "I want my child to use spoken words so they can have an easier life"

"But my autistic child has to learn to speak using words.  It's how to ask for things and it's important for a successful life."  I hear this kind of thinking, a lot.

Most autistic children use spoken language.  Either at the usual point in their young lives, or later on.  Some do not.

There's a myth that forcing us to use the spoken language and social signalling of non-autistic people is 'better'.   That it will lead to better outcomes.  That it will lead to greater respect, more independence.

I'm not so sure. If that's the reality, how come so few of us are employed, and have such bad outcomes?  We are finding that supposedly 'fixed' autistic people have the highest stress, the least support, the most chance of suicide.  The outcomes are often worse, not better.

I grew up as a mostly-non-verbal child.  I could use repeated phrases, without knowing what they meant.  I could write words, then eventually sentences, eventually whole stories...but I couldn't really speak.  I'd go to speak, and nothing happened.  The words would be carefully arranged in my brain, each one thought about and matched up to my brain's picture-imaging. And to my brain's remembering how it sounded when someone else made those noises.   I only think in pictures, not words, y'see.  But...I'd go to speak them, and all sorts of hell would happen.

Maybe I couldn't speak them at all, and was left floundering like a gasping goldfish, moving my mouth but nothing happening (result - hilarity from onlookers).

Or, I could speak some words, but not the whole thing (result - hilarity from onlookers).

Or, I could speak all the words, in the wrong tone of voice. (Result, chaos or hilarity, or people thinking I was some pedantic professor-type or someone very Posh).

Or, I could speak the words, but in the wrong order or with some mispronounced as nonsense.  (Result, chaos or hilarity or people totally misunderstanding me and getting really angry).

Or, I could speak the words, in the right order, but at the wrong time.  The conversation has moved on.  Result - chaos, misunderstanding, or hilarity.

Or, I could speak the words, in the right order, at the right time, without making the right eye contact and face expressions.  That requires micro-second accurate automated control from the brain. Otherwise you do a good impression of a slightly stary scary robot. See 'uncanny valley' articles aplenty on this. Look it up.  Yes, that's what we're training autistic people to resemble.  Not good.   Result - people feel uncomfortable and a bit freaked out, and edge away from me.

Or, I could speak the words, and come out with a sentence that insulted everyone in the group, quite accidentally.  Their understanding of what was important in that sentence...and mine...were different.  I didn't know the rules.

I'm still sometimes non-verbal.  I run a company.  I can run a company AND still sometimes be non-verbal. Shocking, isn't it.  Arguably, I could run this company without saying a verbal word to anyone at all, if I so wished.  I do some speaking because I enjoy having a go at it.  But my brain can only do so much, before it hits 'can't do this any more'.

You can see me writing on here, yes?  I can say what I mean, in writing.  More or less.  Goodness me, I can get misunderstood even in writing - autistic culture is one of accurate info, short or no social chit-chat, and adding more and more data until people understand.  All of that can be a cultural misunderstanding of epic proportions, of course.  But, in writing, I can usually 'speak'.  If I am out of ways to write legibly, I am in deep crisis. I've been pushed into that by intense and relentless mockery and bullying online, on some occasions.  Horrifying stuff to experience.  (Yes, online, we need to make sure autistic young people are as safe as possible.  But that's true for every part of life, not just online.)

I can ask for things, in writing.
I can explain things, in writing.
I can meet people, in writing.  Real people, online.  Real people who are able to say real things to me, in writing.
I can then choose to meet safe and lovely people in person, by setting things up, in writing.  And meeting them in ways that I can cope with.

But, if I am asked to negotiate even the simplest contract using just spoken words, I'm often stuck.  That combination of being slightly-out-of-synch with body language and word phrasing means mostly I end up being taken advantage of, in negotiations.  In writing, I can hold my ground on fairly equal terms.

So...I work with others who can speak hugely well.  They can be my voice.  And my 'verbal bouncers' for people who try to take advantage, assuming that speech hesitancy equals cluelessness about business.  We have amazing lawyers and other professionals who work with us, checking what's what.  My autistic brain is fab at detecting things-that-don't-make-sense in writing and figures.  Better than most others, in fact.  Not boasting, just saying how it's possible to run one of the companies in the UK that has a fantastic reputation for professionalism....whilst autistic.  Because, together, we are a team.  Together, we make it work.

I can train others, speaking in front of huge crowds, on subjects I know.  It takes me days to prepare, and days to recover.  People see the very verbal Ann and think it's easy.  It's hell, using words.  No, it is.  It's so exhausting. It's why our team and supporters at the events keep people away from us in the breaks...we literally cannot speak all day long without a break.  

Such a relief to be with my loved autistic family, friends and colleagues who allow me to speak in ways that I can cope with.

I see a lot of autistic people who are forced to use communication systems that just exhaust them, year after year.  A bit like insisting that a wheelchair user must stand up each time you enter a room, to show you respect.  Time after time.  "If they don't show respect to you, and to everyone they meet, by standing up each time, then people won't respect them.  I'll get someone to train them to stand up, no matter what pain or exhaustion results each time. This is good for their future".  It's similar to that.  With acknowledgement to wheelchair user friends that quite often that kind of thinking is exactly what they get, too.  It's also like forcing Deaf children to speak, and not allowing sign language and other communication methods.  Again, the Deaf communities have had plenty of that kind of behaviour forced on them.

How about we teach that it's OK to show respect in words.  Or pictures.  Or sign language.  Or any other form of good assistive communication?  That it's OK to make friends using written words.  That it's OK to ask for things using something that isn't words.

How about we teach that it's OK to be autistic ...and that everything we do doesn't have have to mirror your way? 

If parents and carers want good outcomes for their children, they need to build on their strengths, not exhaust them and force them to be something they're not.

I show respect and love differently.  And different is OK.

Thank you for listening.

The picture at the top shows three children gathered round a computer tablet, using it to communicate.

Tuesday 7 November 2017

"Autism-Friendly Event" What do we mean?

I see a lot of venues starting to offer, "Autism-Friendly" events.  

Some are very good.  For example, perhaps they think about holding the event in a quieter location, using non-flickering lighting.  Maybe they think about offering a quiet 'escape space' for those needing downtime.  They have staff who are trained on modern understanding of autism, and are relaxed and enabling with people.  They do not hold the event in a room filled with decor closely resembling an explosion in a paint-and-pattern factory, with jet-engine-noise from air conditioning and bathroom hand driers....with no way to get away from that chaos. They don't have to make every inch of the venue noisy for each and every one of us attending.

They can think about advertising in ways that most autistic people can access.  They provide enough advance info, plans, photos etc to give confidence about sensory hazards that still exist - and how to avoid them.

But, some events advertise themselves as (for example) "Autism Friendly Performance for You and your Children With Autism.  We won't mind if you child runs around making lots of noise". 

Some puzzlement about the phrase, 'Children with autism'...I mean, do they bring the autism with them in a separate bag?  Are they children with whiteness, or children with Blackness?  What about children with maleness or femaleness?  Most autistic people like to be called autistic people, although one needs to respect individual differences of opinion, of course.  Be aware of autistic preferred language when advertising generally, and be ready to adapt that for individuals.

The thing is, though, most autistic people aren't children. Most of us are adults.  Most of us do not run round things, making lots of noise.  A good number of us are very very quiet and well behaved indeed.  Many are professionals, many are older or elderly.  Many are middle aged mums, like me, fitting in events around our jobs and family lives.

The picture shows how a busy, noisy event looks to my particular autistic sight.  So difficult to navigate and make sense of. A chaos of colour and pattern.  I am blinded and deafened. Exhausting.  

What a good number of venues mean is, "We will turn the lights and volume down a bit, and let young children run around wildly for the whole time they're here, making as much noise as they like...and we'll guard the exits".

There are occasions when that is important.  A number of events are specifically for lively children who also need a lot of safety as a result, of course.  But, some other types of venues also think this is what 'generally autism friendly' means.  No. If anything, it is a peril for many autistic people.  For example autistic young people and children who need quiet, and find lots of racing-about to be very overwhelming and frightening.

Also, autistic adults who need quiet, and aren't able to cope well with a load of children screeching and sprinting around them. 
Autistic adults or children who have mobility difficulties, and who may be knocked flying by fast-moving autistic children.

This is why it is important for autistic people to have access to a range of events, and for safety to be thought through for everyone.  

Not least because many autistic adults wish to attend all sorts of events.  Events showcasing art, sculpture, ballet.  Concerts. Religious services. Shops.  Restaurants. Theatres. Exhibitions.  Consultations.  Meetings.  Lectures.  In fact, every single event and venue that everyone else gets to go to.

No, we don't need a separate autism-event for each of these.

We may need advance information of what's ahead.  We need that information to show us the main sensory hazard areas, and the quiet area to get away from those. Get autistic people to help spot the sensory hazards in your venue.  Photos and plans on a website are great.  We need to know that the staff aren't going to think we're rude for not making eye contact, or being unable to speak using clear language.   That's good basic autism knowledge and information.  Those sorts of things enable so many of us to access things all day, every day. enables everyone else to feel comfortable too.  People who are nervous.  People who are shy.  People who are exhausted.  People who are new to the venue.  People who don't have English as a first language.  Everyone knows what's ahead.

It helps venues get the business of an extra million-plus autistic customers in the UK.  Plus their families and friends, their colleagues and allies.

Most autism access is very easy.

So, yes please to having places where parents don't have to worry about their children exploring and making noise.  That's important.  But please don't mistake that for your organisation ticking all the boxes for 'autism friendly'.   

Most of us are not children.  The rest of us would love to attend your fabulous events and venues, too.