Autism Acceptance - My list of positives

After a lifetime of living with and alongside autism....and reading one too many lists of negatives...

My own prayerful list of "Autism is".

Deep encounter through senses, seeing detail unimaginable by so many others

Wonderful honesty

Great integrity

A delight in learning

Clear morality and fairness

Painstaking accuracy

Glorious creativity and artistry

Skilled craftspeople, making such a difference

Leadership

Vision

Friendship with great loyalty

Caring parents

Fabulous aunts and uncles, brothers and sisters

Wise grandparents

People unafraid to say no to the false traps of 'fashion'

A joy in rhythm, in flow, in pace

A wonderment at the world around us

Fabulously diverse

Deeply spiritual

Lovingly caring

Great seekers of social justice

Such a blessing to this world

If only we are allowed to thrive as ourselves, not as a pale imitation of people we are not.

If only parents, carers, teams and companions are allowed the right resources, training and understanding.

If only some people would stop mistaking autism for things that are not autism.  Or mistaking our pain and fear responses for 'autism'.

If only some people would stop listing almost nothing but negatives.

In honour of the autistic people worldwide.

I am so proud to share the world with you, and with all other people.

The picture is of wallflowers in sunshine, growing on a high wall at Fountains Abbey. Copyright Ann Memmott April 2017 - can be shared but not for profit.  For me, it symbolises autistic people thriving together, finding faith in one another, despite the often harsh surroundings. 

Why blocking autistic adults isn't helping your children - and a little about faith

Hello.  I'm Ann.  I'm autistic.  My son is autistic.  Other family members are.  Most of my friends are.  Most of my national autism work colleagues are.  I've worked in autism for more than 20 years.  I advise the All Party Parliamentary Group for Autism, and serve as the Vice Chair of the Advisory Board, unpaid, external. I am a senior trainer for the NAS-award-winning group, Autism Oxford UK.  I am a Christian, and help advise churches across the country on how to respond with love to autistic people.  I am co-writing a book on autism and theology with a fine theological friend.

I am not at a 'mild end' of autism, whatever that is.

For the first ten years, I did not use language to communicate, and didn't know what people were.  I knew who God was, though.  It didn't matter to him.

I rocked, I flapped, I panicked, I ran away in supermarkets to get away from the terrible noise and chaos.  

I'm still autistic.

If I read an autism 'awareness' poem that tells me autism is about violence, aggression, eating dirt, obsessions, screaming, head-banging, won't do as their told...I think, "Oh my goodness...In fact, in the whole poem, there are only two positive things.

Who would want to befriend an autistic child after reading this?

Who would want to hire an autistic person after reading this?

Who would want an autistic child in their church after reading this?

Yes, some children of all kinds are violent, autistic or not.   Autism isn't the cause.

Yes, some children of all kinds scream, or eat dirt, or self-harm to escape pain.  We see an epidemic of self-harm amongst teenage girls, for example.  Autism isn't the cause.

Most autistic people are gentle, kind, thoughtful, quiet.  We might rock, or flap, or run away from scary things - but anyone else would run away from scary things too, when young.

I've brought up an autistic child and been around autistic children for 20 years, helping with toddler groups, being a child minder, being a youth leader in churches, being a helper in schools. Advising schools on autistic children. Advising parents on autistic children.

I start by thinking, "Is this necessary, to talk about the child in this way, when they can read, and hear....or may soon be able to read and hear and understand?"   Is it kind?   Is it going to give a better future?

I was in tears today.  Absolutely devastated to open my social media and see people in positions of huge huge responsibility and media presence, unaware of the shocking impact of describing autism in endless negative ways.

You see, it's not just one article, one poem.  It's relentless.  Every day.  Every single day.  We wade through article after article, poem after poem, story after story, describing us as a nightmare.

"Oh but we love our children".  I'm sure you do.

Which is why you have to stop blocking people like me, and start listening.

Yes, you're tired.  Yes, you're exhausted.  It's people like me who are fighting to make your child's future better, alongside you.

Blocking us, when we say 'this hurts'?   No, that's not a good place to start from.

Be aware of the suicide rate for autistic young people, and indeed autistic people of all ages.  Please keep negativity away from your children and where they can later find it and read it.

God loves autistic people as they are.  And we are not a long long list of negatives.

Thank you for listening.

Autism Acceptance Month - Time to Listen

A blog by Ann Memmott, who is autistic, and for ten years, was non-verbal.  Still is, sometimes.  A Christian.

'Autism acceptance month'.  

Some call it 'autism awareness month'.  The autistic community generally do not.  You see, most people are 'aware' of autism.  But the way it's been done, over the last few years, has been largely negative.

I ventured onto social media yesterday, and was met with a barrage of the most appalling things about autism.  Parents, carers and organisations posting up item after item about our 'deficits'.

Summarised:
"Come see Autism Awareness Materials - I'll tell you about my child Sam.  He has toilet issues, he eats dirt, he is violent - this is autism, honest guv".  Complete with pictures of Sam.  Might as well give out Sam's address too.   After all, if we're going to humiliate a child, we might as well do it properly with all the details?  No, that's not a serious suggestion.  It's a comment to make people think.

Stop.
Think.

What is that doing?

Are the people concerned making the lives of autistic people better, by saying humiliating things about their child to the world, using their name and picture?  Are they?  Really?

Do you know the suicide rate for autistic people?  Do you think it could be in any way connected with being brought up by carers who do this kind of thing?

Autistic children are not vegetables.  We see, we hear.  A surprising number of 'non-verbal' autistic children can understand everything they hear, and from a huge distance, thanks to super-sensitive hearing for many.  If you are told you are a deficit, a disaster, a disappointment....if your experience of love is your parent parading you about as a set of problems....telling people how you have destroyed their life...how do you feel?

Autistic people are often told that we lack empathy, lack understanding. Mmm, no.  I put it to you that I see a huge lack of empathy for autistic people, every single 'awareness month'.  People supporting charities that are arguably eugenics-based.  People 'lighting it up blue', and thus supporting an organisation feared by most autistic adults.  People claiming that people like me aren't 'real autistic people' like their child. People saying God will cure us whether we want that or not.  People deciding we all suffer, without consulting us.

We are their child, when their child grows up.  Me and so many other autistic advocates and professionals.  Verbal or non-verbal.  Of all IQs and backgrounds.

And the people who are saying and doing this stuff to their children need to stop and listen.

Yes, we all need better support, funding and training in place, to enable every autistic person and their family/carers to lead good lives.

No, we do not benefit from being listed as a set of disasters in front of the public.

If people tell the public we are nothing but a set of disasters, all two million of us in the UK, then what are we achieving?  Jobs?  No.  Support?  No.  Friendships for us?  No.  We are making it harder than ever before for us to succeed.  We are boosting that suicide rate, and lowering the life expectancy.  It's not working.  At all.

Most autistic people are not violent.  Many work hard for world peace and for charities and faith groups of all kinds.
Most autistic people are not disaster.  We can bring huge strengths and wonderful insights.
All autistic people - whether verbal or not, whether of lower IQ or any other IQ - are much loved children of God.

Most are kind, gentle, generous people.  Sometimes in extreme pain or fear because of the misunderstanding and maltreatment.  That's the suffering - being put into sensory and social environments that cause pain.

All are loved.
All are valued
All are to be respected.

Respect your child.  Say nothing in public that wrecks their chances of respect, friendships and a good future.  Yes, being a carer can be tough.  But think about the impact on your child, from saying what you're saying, in public.  I've lost count of the parents who said to me, "But my child will never talk and will never understand, so it has no impact on them".  Oh my.  Oh dear.  No.  Wrong.

Read good autism acceptance materials, from autistic bloggers and professionals.
Go to good autism events run with and by autistic specialists.
Support organisations that are supported by autistic individuals.
Look for #redinstead and #actuallyautistic or 'Light it up Gold' materials on social media.

Get to know us.  I have never been so proud of a group of people, my autistic family and friends, colleagues and fellow professionals.  Just absolutely wonderful.  And if you start with that attitude, good things happen.

Thank you for listening.



Picture description:   The picture at the top is a box with the words, "Autism Acceptance  - Because we're fabulous'.  There is also a picture of the autism community's chosen symbol, an infinity loop in rainbow colours.  This is a good symbol for autism acceptance, rather than the 'puzzle piece' logo used by some others.

Shocking stuff from 'Inspirational Parent Speakers and Authors'

The photo shows a shocked older woman.  

I'm shocked.  These days, it takes quite a lot to shock me, because I've seen and heard a lot in 20 years as an autism professional.  But today, I read the 'inspirational pages' of a mother whose child is autistic.  The mother in question has devoted a whole page to her Inspirational Achievements, helping parents whose children are autistic.  She has set up a conference about autism, at which there is not one autistic professional.  Not one.  I repeat that because it's worth repeating.

But even that didn't really shock me.  Apparently it's fine to run conferences where every bit of information from professionals is second-hand.

The thing that stopped me in my tracks was her claiming that having an autistic child may cause cancer.  The stress of it all, you see, she says.

Hold it right there.   There is no known direct link between stress and cancer.  We have endless research into this.  So we can safely establish that this is nonsense.

And, children, Mrs Inspirational Autism Mother, will grow up believing that they are responsible for the death of their carers from cancer.  

Do not say things that will damage a child and cause them even more reason to display the 'distress behaviour' you claim to wish to stop.  We have too many autistic young people trying to kill themselves.  Too many parents truly believing that their child cannot hear, and cannot read.  Shocked also that this individual is now a key speaker for the NHS.  

  

Really, NHS?

Sesame Street and Autism

The famous US television show for children, Sesame Street, has introduced an autistic character. The picture above shows "Julia", the young autistic girl, looking at a butterfly. There was some controversy when Julia first appeared in 2015 in some Sesame Street materials.  The autistic communities and organisations in the US have had some input since then.  We shall hope that things go well, in the storylines.

I am delighted to see autistic characters in shows.  I have two concerns about some aspects of this character.   We learn that it's a non-autistic person who does the voice for her and explains what she is feeling.   Why not one of the millions of autistic people, many of whom are excellent trained actors?   

We read that this is about, "people with autism" and "a child with autism".  That's 'people-first language'.  The idea that unless you put the word 'people' in front of the statement, no-one will know that we're people.  Most odd.  So, I'm a person with whiteness, and person with femaleness.  I'm also a person with right handedness, a person with Christianness, and a person with gayness?    Is that the logic of person first language?   Then why don't we say those things too?   

We don't say, "person with femaleness" because we are not ashamed of being female. And we know females are people.  I think we do.  It goes without saying, yes?

In autistic communities and groups, most don't say, "person with autism", because we should not be ashamed of being autistic.  And we know autistic people are people.  Same principle.

I respect that some autistic people want to be called 'person with autism'.  If that is their personal choice, great.  I'm fine with personal choice.  Most do not want to be called that. There's research.  Truly, most don't.  

I respect that for some, their lives are made hell  - with endless socialising forced on them, inappropriate sensory environments, etc.  For some,  autism can seem like a burden.  I'd like a world that respected our needs and was prepared to offer us the courtesy of adaptation.   For those who have long hours as a carer, with little support, I'd like much better support and better training available for families, carers and teams.   Working as hard as I can to help achieve those things.  I have an autistic son.  I know what you mean.  I'm not for one minute saying that there are no challenges, or that everything is easy when you're different.  But all the tragedy-talk?  It's been a disaster.  Truly.  It's done the opposite of what was hoped for.

So, when a show uses 'person first language', it's making a choice.  A choice that says that the majority of autistic people don't get to decide on the language.  What does that say to autistic people?  I'm not sure.  I know it feels uncomfortable.

In the online media today, we see why positive autistic characters are so important. Comment after comment from some of the public, calling autism a disease (it's not - it's a natural variation of brain design).  Others saying we're all a tragedy.  Mmm, no, most autistic people are fabulous. Every single person is loved and of value as a fellow human being.   Others saying that we are an epidemic that needs wiping out.  No, we've always been here, in about the same numbers - we are just better at diagnosing it now.   And others saying it's a mental illness, which it isn't.  So, endless myths still out there.  Much to be done.  For those autistic people, their families and friends who are reading some of the comments, I'm so sorry.  Truly, I want a world where stuff like this isn't said any more.  Little wonder that the suicide rate of autistic people is so high, when we endure such commentary almost every day of our lives.  It needs to stop.  Really, it does.  It helps no-one at all.  We are all worth respect and love.  If you woke up each day to a barrage of, "You're a disease/danger/monster/burden/low functioning cost to society", how would you feel?  

I want to thank the creators of the autistic character on Sesame Street.  I hope that, together, everyone learns a lot about the wonderful autistic people we share our lives with.  Whether verbal or non-verbal.  Whether young or old, male or female, of any IQ and set of abilities.  We're as varied as any other population of people, but also autistic.   Honest, loyal, dedicated, passionate about learning and about our specialist topics, sensing the world differently to others, communicating differently to others - and adding so much to families, friendships, communities and workplaces.

As you're reading about Julia, or watching the show, find out more about autism from really good sources.  Get good training from groups like Autism Oxford UK, the National Autistic Society award winners for 2016.  They train across the country using autistic professionals who I am proud to work with as a senior trainer. Support charities such as the National Autistic Society, who I help advise, quietly in the background.  And get to find out more about the autistic people already in your life.  We're 1 in 30 of the people you already know, already work with, already share friendships with.  You didn't know that?  That's because so many of us are scared of those public reactions...and others don't know they are autistic, yet.

Be an ally.  And a friend.  It really helps.  
Meantime, enjoy the show.

Autism: Access for All

I am passionate about access for all.  Especially to places of beauty, art, music, creativity, faith. So many autistic individuals are quite unable to access many such places.

I am fortunate to work with the Royal Collection's properties such as Windsor Castle, and with National Trust, English Heritage, Glastonbury Abbey and many others.  It's about individuals and their families having confidence that a place is accessible.

The most simple things can turn a lovely day out into a painful and exhausting process for autistic people.  There are some 2 million of us in the UK, of all ages, IQs, male, female and other gender identities.  Nearly all peaceful, kind, thoughtful individuals.

I would commend this two minute video to anyone trying to understand autism.  Autism is mostly a sensory processing difficulty. This is one young person, trying to access a very simple thing - a visit to a coffee shop. https://vimeo.com/52193530  It needs sound, turned up as loud as you can bear.  Most others can 'tune out' background noise, flickering lighting, intense smells.  Our brains cannot.  In such a place, it becomes deafening and blinding, quite literally.  Hence the escape behaviours and pain behaviours that one sometimes sees from a small number of the two million autistic people in the UK.  Many of the rest of us learn to avoid such places, at all costs.

But...if one has to avoid restaurants, cafe's, toilets...then where can one go?  Where is safe?  A visit that turns into a hungry, thirsty, desperate experience is no fun for anyone.

A good audit takes a very short amount of time.  It gives places a clear idea where the 'hazard areas' are going to be.  They can then make a judgement on how to improve this (often cheaply), or how to direct people to somewhere easier to cope with.     Armed with this information, people can make a decision on their own safety and wellbeing.  Very simple, very good news for all.   Why for all?  Because once people have made a place less of a sensory nightmare, it benefits everyone.  We saw this clearly with visitor numbers for 400 historic buildings.  Those which were 'autism friendly' saw their visitor numbers rise.

How to achieve this?  One goes to an autism access specialist, as most disability access advisers are not able to detect the hazards.  Autistic individuals can hear and see differently, and if you are not able to do that, you will miss things.  It's why it is vital to work with us, not guess.  Often, non-autistic parents or local non-autistic charity leaders are asked to tell a place what would help.  Mostly, their view is that places need lots of things for children.  Yes, it's lovely to have a play area.  But most autistic people are adults, some of us very senior businesspeople, and us playing on the swings is not an especially good idea. OK, it is fun....but....

Non-autistic parents then wonder why their children are often still screaming at the end of a visit.  Or have run away.  Or have injured themselves because they could not see a hazard.  Easy; the non-autistic parents cannot see the sensory hazards, so inadvertently dragged the child through a set of very painful and exhausting zones.  Without any idea, for that child, when the pain is going to stop.  Wouldn't you perhaps scream, fight and run?   Most autistic individuals don't.  They 'shut down' instead.  We become unable to communicate our needs, and can just stop moving.  It is because our brain shuts itself down to save further pain.   It's a terrifying experience for us, and dangerous. Either way, it's a situation that is easily avoided.

This is a fast hand drier.  Lots of places install them in the loos.  Result - many autistic people cannot access the space.  It sounds like a jet aircraft taking off, right next to us, unexpectedly.  So loud that we are forced straight into a brain event. If one knows about this, one can avoid purchasing them.   One can otherwise direct to an accessible toilet where there are paper towel alternatives.   It's easy to start to think round the challenge.

 

Designing a building?  Start by asking an autistic consultant to work with the project team, so that you can avoid costly errors that may lead to injury or worse for autistic individuals of all ages.  We can assess buildings at the planning stage, or at any stage of fix and fitting thereafter, ensuring that light, sound, airflow and space considerations work for all users to the benefit of all, and with minimum extra cost.  Did you know that changing the handles and bannisters can make a huge difference, for example?  Or that a simple change of colour from intense white to a softer shade with good contrast to edges can help autistic people as well as most others?  Installing a Building Management System to control heating, air conditioning, etc?  Take advice on noise levels, vibration considerations, etc.

 

Much of the existing design information around autism was based on the old standards from decades ago, when there were the myths that we all had learning disabilities and all lived in care homes.  Only 2% of autistic people fit that description.  The rest of us are right here, next to you.

It is good for business, it is good for PR, and most importantly, it means fewer of your visitors will be in a state of pain and exhaustion after a visit.  Fewer injuries, more profit.  More members, bringing more of their family and friends, and having a fabulous, cheerful time.

Autistic people would love access to the same beautiful things as everyone else.  Often, we are the artists, the sculptors, the musicians, the people who have the ability to donate monies.  Then, we find we are unable to access the very events that promote the work.   As the saying goes, "Industry without art is brutality".  

I'd like a less brutal world for us all.  Would you?

Joining The Feast

"Nothing about us, without us".
That's a phrase we hear, often.  Yet, we get a lot of people writing books about autism and faith who are not autistic, and who do not write with us.  We also get a lot of people who are not disabled writing faith books about disability, without disabled people.  Or, giving conferences about disability with whole teams of not-disabled people.  Or, even worse, with anti-disabled-people groups, whose job is to make us invisible, without our permission.  Using us as tragedy stories.  It's great to have allies.  Collaborative working is great.  Being written about, without our input, not great.

I'm a strong believer in the right of autistic people to choose for themselves.  To choose whether to follow a good faith.  To choose whether to worship.  To choose not to.  To choose, with the best possible information to allow that choice.  My own faith is Christian.  

Faith books written by parents of autistic children are great, but they are not by us.
Faith books written by 'Experts on Autism' are great, but they are not by us.

I'm mindful of some of these expert academics having huge influence.  If they write that autistic people cannot possibly be Christian unless they can speak, well - lots of people are going to believe that.   Then, we have a problem.  Because once we have said that autistic people can't be Christians without speech, it's easy to move to, 'Well, they're not really humans, are they.  Why would God have a relationship with them'.  We know what happens when we dehumanise populations.  Autistic people already die on average 16 years early because of the lack of understanding of our needs.   

The lack of understanding of our faith needs is a part of that.  

I was aware of God well before I could speak.  Well before I could work out what other people were.  God has no difficulty at all in communicating with people of all kinds.

It is so important that the faith, the understanding, the prayer, the leadership and the worship of the wonderful autistic population is heard.  Heard without being filtered out by non-autistic people.  Heard without being altered.  Heard, authentically, richly, powerfully. One of Jesus's good friends was autistic.  And even after Jesus died, Nicodemus was still autistic.  So much for the need to pray for our cure, eh?

I have been honoured to be alongside Helen Tyers, Theologian and friend, for some years.  We met when co-running disability theology retreats at Sarum College, next to Salisbury Cathedral, with many fine others.

We are setting up a theology project around autism.  Its title, "Joining the Feast". A website, an 'Appetiser' paper, a book.

Others are of course doing their own work on this.  We are not claiming to be the first ever.  

It is a starting point for collaborative working with others.  For others to explore the ideas, to grow in confidence to say how their faith journey is.  To be able to share with others who want to hear and read what they want to say.  For them to build in confidence that they do indeed have something to say, or write, or draw, or use music or dance or movement to express.

It will not be about getting awards, or being cited in academic documents, or winning funding.  It will not be about getting our names in the media, or earning money.

It's about God, Jesus, autism.
It's about love.
It's about the banquet for all.

More in a week or two.

The picture at the top is of a stained glass window, showing a lit candle, bread and wine.  Around it, a circle showing rainbow colours.