Wednesday, 18 October 2017

Comparing Autism Therapies to 'Chemotherapy'

In last night's otherwise-fabulous Chris Packham television documentary about autism, a Head Teacher of a large and well funded Applied Behaviour Analysis school in the USA was interviewed.  The Head Teacher told us that ABA is 'educational chemotherapy' for autistic children.  Vital to ensure their survival.

I, and a very large number of my national autistic colleagues, sat in stunned silence.  The therapies shown involved hour after hour of exhausting training for the children, ignoring signs of distress.  I've blogged before on ABA and why I and many others are not keen on it.  No, not even the 'nice' sort that bribes the children endlessly to comply with non-autistic culture and communication. But especially not the sort that regards us as cancer.

I have a particular perspective on the words of the ABA Head.  I am autistic.  For some years, functionally non-verbal.

In 2011 I was diagnosed with an aggressive form of cancer.  I was given four sorts of chemotherapy.  And radiotherapy.  And surgery.  And wonder-drugs.  And further surgery when the radiotherapy caused further difficulties.

It worked.  The chemo worked.  So far....
But...the net effect of all of that was appalling. Ignoring the nausea, the hair loss, the exhaustion. at the time.. I live with a huge amount of damage caused by the treatments.  Damage to nerves.  Scars.  PTSD type stuff around anything medical now.  Damage to veins.  Constant pain.  We are seeing a lot of chemo patients with heart disease, with all manner of other long term conditions caused by chemo.  There are days when I wonder if it was worth it.  Truly.  Yes, even though I love my family and friends.

The chemotherapy and other treatments were offered because otherwise, I would have died.
They were offered because we had no other choice if I wanted to stay alive.

To compare autism to cancer is appalling.  I want to say that first of all.  I am not a cancer. 

Your child is not a cancer.

To suggest that our autistic lives are so terrible that we must be treated appallingly for years 'as our only chance' is not only wrong, but damaging beyond words.  Humiliating. Damaging to self-advocacy. A risk to safeguarding, teaching children to comply at all costs.  Teaching them that their natural behaviour and natural ways of communicating are irrelevant.  Yes, a small number seem to benefit. The ones that don't are removed, quietly, from the schools and the studies.  Oh yes they are.

Yes, some behavioural specialists are kind, and considerate, and don't use ABA on the children at all.  They use stuff that is a long, long way from actual ABA, but call it ABA because it gets insured, that way.  I'm not talking about things-that-are-not-ABA.  I'm talking about actual ABA.  I hope that's clear.

And, to that Head Teacher, supervising the teams for those children screaming in distress, comparing them to a cancer - goodness me, I have no words.

Parents, there are endless respectful, lovely therapies and techniques out there.  Truly there are.  ABA is not the 'only cure'.  In fact, it's not a cure at all.  I've seen the research that shows that children who appear to 'lose their diagnosis' after ABA in fact revert back to autistic behaviours later on.  Of course they do.  They're autistic.  They were trained to pretend.  Exhausting, dispiriting. 

"But all children need to learn skills".  Yes.  So find a respectful therapy that teaches those.  Basic parenting skills around autism.  Occupational therapy.  Autistic trained specialists who will happily teach your child. All sorts of possibilities.

"But my child injures themselves - do you want that to continue?"  Of course not.  Find a respectful therapy that works out why they are doing it, and works with them to find a solution. Plenty out there.

This isn't chemotherapy.  And, if it was, you certainly wouldn't want to be giving it to a child when kinder treatments are available, would you?

If you are booking your child into ABA therapies..or any other therapy... take a good long look at your motives.  Ask really, really good questions about which 'behaviours' they are training out of your child.  And how.  Really ask. You can find a good, respectful, kind, caring therapist who believes in your child... believes in their humanity and their need to be an actual autistic child.  Lets your child be a child, playing autistically and having fun autistically,  without every single moment of their lives being manipulated to 'teach them' to be some other child. 

Look for places that have autistic leaders.  Autistic trainers.  No,  not 'trained autistic zoo exhibits' that stand up and tell you how fab the school is.  That's something different. Actual autistic people working in positions of authority and influence, in that setting.  Can't find them?  Be concerned.  This is the future of your child they're modelling. Why aren't they using 'out and proud' autistic people as paid managers in that school?  As teachers?

Avoid anything that describes itself as 'chemotherapy' for your child.  They deserve better than being compared to a cancer.

Good luck out there.

The Festive Season and your Autistic Child

The Christmas Event. A tale of my past, as an autistic non-verbal child.
It's not quite the season of Christmas cheer, but it is the season where a lot of people start making plans for Christmas.
So many autistic children dread Christmas. Absolutely dread it. Not all. Some love it, because they love the overwhelmingness of it...but even then, watch many having meltdown after meltdown after that chaos.  What I write here is a generalisation.  Each autistic child is different.  Always ask what works for us.

Everything changes. In the last few weeks of term at school, everything changes. School plays to rehearse for. Christmas decorations to cope with. Timetable changes. The horrible 'you're not picked for any of the parts in the play but we'll let you hold a balloon whilst dressed as an elf' stuff. Changing into and out of searingly-painful costumes for dress rehearsals. Coping under bright lights and intense scrutiny. Trying to understand vague instructions.
Trying not to feel any smaller than I already feel.
Then, we go home, and home's different too. The adults are stressed about Christmas. The house fills with people, all of whom want socialising-with, and who will be offended when I can't. Or when I get it wrong. The decorations are so bright, so intense. Sort of fascinating and beautiful if it's just me and the decorations. Overwhelming when the room fills with people. The nightmare of trying to speak to say the Right Thank Yous to people. Otherwise, offence from them. Anger.  The dread of opening random presents, unsure what sensory or social consequences will occur.

The programmes on TV change, too. The daily routines at home change. There are new smells, new textures, new items everywhere.

"Let's go to a Fun Event everyone", someone says.

Out we go. I know not where. Into the crowd, the noise, the sensory hell of the event. In front of me, perhaps keen but clueless non-autistic 'helpers' who will make lots of eye contact with me and sound really bright and cheerful. This pleases the parents and the people paying for the event. "We want bright, cheery people in the room, after all".

I have no idea what the event was. I'm deep in survival. With any luck, no-one will pick on me and make me do a something for the cameras, a game, a 'fun activity' with lots of social rules. Oh, they do. I feel sick.  I can't process what's happening, fast enough.  I get it wrong.  The other children soon learn to play separately and abandon me.

Smile, Ann. Smile. Smile as though your life depends on it.  Smile and behave. Smile and force yourself to make eye contact and wear the painful scratchy jumper  given by Aunt D. She spent ages knitting the jumper and you Must Not Offend Her.  Even though you feel sick with the pain and overwhelmingness from it.  Count for as long as you can count. If you count to ten thousand, maybe it will be time to go home. Maybe it will be time to go to bed, where in the quiet and dark, I can be me.  Smile, Ann. Smile for the cameras.

I was that child.
I smiled.  I complied.  I buried the pain. Is a useful video of one autistic young person's experiences at a party. Needs sound as well.

Jesus was not born in order to torture autistic children into pretending to be happy.

So, what can we do to help autistic children at Christmas or other big party and celebration occasions of any other sort?
We can plan ahead, including them in explaining what will happen and when.  Allowing them space to process it all, including a quiet place to go when it is too much.  Using visual support, if needed.  Perhaps a 'test run' to a venue, so we can imagine something of its layout and soundscape before the main event. 

We perhaps could be firm about saying to random relatives and friends, "No, you can't just turn up to the house with a horde of others at short notice, demanding that my child be present throughout - because it will cause immense distress for my child, thank you so much".

We can help that child to express what would work best for them, and listen, and think.
If there are non-autistic children to consider also, then respect the 'safe space' of the autistic child. Let them go to a safe bedroom or quiet room. Or use a pop up tent, headphones etc to give them a sensory space. Let them enjoy the things they can enjoy, without enforcing non-autistic social norms on them.

Don't expect Perfect Social Manners. We may signal happiness in totally different ways to you.  Failing to make eye contact or give everyone a hug is not rude, in autistic communications.  It's respectful.  Frankly, no-one should be forcing children to hug or kiss people if they don't feel comfortable doing so.  Body autonomy is a vital part of safety, in life.

For outside events, plan ahead. Ask. Be prepared for us to bail out into quiet space when it's needed. No quiet space set aside for us? Don't go. Or, take your own quiet space (that tent, those headphones etc).

Make it clear that it's always always OK for that child to stay safely in their own boundaries.  Think about taking a safe toy or activity.  Don't get angry if we want to stay with a safe person rather than join in with the chaos.

Then, we can start to relax and enjoy.

I see a lot of autistic children in the festive season. I recognise the desperation.  Both from the children, who are having to work hugely hard in baffling new circumstances.  And from the adults, who can't understand why their child isn't happy.  Or appears happy at the event, and then has meltdowns or shutdowns for days afterwards, during recovery.

And it's why I and others do the work we do, in ensuring that events and venues are as doable as humanly possible for autistic people of all ages.

I still dread parties.  I love being with people.  I care deeply about people.  I can't hear, or see, in a party.  It's terrifying.  So I will turn up and stay for only as long as I can manage.  That's OK.   And, if you are friends with an autistic person, tell them that's OK.  That's what we need to hear.

Thank you for listening.

The photo shows a red bench, in the middle of a snowy woodland.  For me, that would be a perfect Christmas venue.  Beautiful, peaceful, glorious.  I could sit side by side with a trusted person or two, just communicating the sheer joy of their company and the view.  Sharing time and space together.   

Wednesday, 11 October 2017

On being an Autistic Mum to an Autistic Child

With the kind permission of our fabulous son, Chris (featured in the photo, a couple of years back), a little about life as a parent of an autistic young person.

Actually, as an autistic parent, of an autistic PDA young person.  Although he's a young adult, now, working as a fellow autism specialist.

On this journey, there have been some fantastic people.  I thank them all.  What I am about to describe is a selection of the situations so many of us have experienced, though.

Things we've worked through together as a family...a tiny sample...

Non-autistic parents sneering at Chris's social behaviour, and judging us as parents.
Having to teach Chris traffic skills, when he used to dash out in front of passing traffic if we didn't keep 100% focus.
Pulling him out of a pond, where he'd nearly drowned, unaware that it was water.
The hell for us both, in sensory environments that brought the pair of us to our knees.

18 hr days where it was absolutely non-stop with him.
Battling schools who described him as 'just not very intelligent' and writing off his chances.
Having to fight the education system time after time, changing schools twice as a result.
Him being berated by some teachers for not being able to match up to their expectations, when in sensory hell.
Watching some non-autistic friends abandoning him because he couldn't do their social events.
Watching some non-autistic people targeting him for insults and abuse. [Not that wise, when someone's a rugby prop, but that's another story...]

Me as an autistic parent, struggling to cope, without outside support, in the early years.
Me as an autistic parent, struggling to cope, without outside support, through chemotherapy and other treatments for aggressive breast cancer.  Me as an autistic parent who has a number of other disabilities and differences, including arthritis, faceblindness and spinal scoliosis.
Me as an autistic parent being told by some autism hate groups that I have no clue about autism and should just shut up.  But not as politely as that.
Me, and the whole family, living through two recessions that very nearly sank us, financially.

Chris working through the sensory hell of keratoconus and related eye surgery, and all of the difficulties with light processing that he has had since.
The assumption that because I can talk 2/3 of the time, that I can advocate always, confidently, and 100% accurately.  On demand.  In any sensory and social environment, any time of day.
The assumption that because I am hoping for a world that loves and accepts autistic people, I cannot possibly know about Real Autism, and Real Autism Parenting. 
These and so many other things.

I'll tell you something - that Chris is such a blessing to us.  He is absolutely fantastic and has brought so much to our lives.   He is hugely loved.  There is nothing about him that I would change.

I've watched him overcome huge odds, time after time.
I've listened as a minority of parents sit down in front of me to talk about how their own offspring have entered the finest possible Universities, gained the finest possible Degrees...and then quite literally sneered at Chris's achievements.  It's odd; we couldn't be more proud of our son and all he has overcome.

Goodness me, we've lived through stuff.  Together. As a family.  Every misconception, every setback, every item of hate.

I would like a world where autistic people don't have to fight for every single thing.
I'd like a world where parents of autistic people are not left exhausted and unsupported through the most dire situations.
I'd like a world where autistic people are valued, loved and enabled to thrive.
For those things, I work hard, like so many other autistic people.  Am I anything special in all of this?  No, just one of many.

i'd like every young autistic person to be valued by society.  Whether verbal or not. Whether of high, low or medium IQ.  Whether of any background, ethnicity, faith or nationality.  Of any gender and sexuality.  Of any set of other disabilities and conditions.  Each and every single one.

If you would like that too, join me and so many other autistic people, sharing the past and present, so that we can turn it into a better future.  Not for pity.  Not for attention.  Not for manipulation.  But because that future is not going to improve unless we acknowledge what needs to change.

Be the change.

Thank you.

Sunday, 8 October 2017

Autism, Morality, Love, Empathy

I have many professional colleagues who do a fabulous job of improving the lives of autistic people.  I want to start by saying that.  It's important to affirm that many people are thoroughly supportive and splendid.

I and others train a good number of the Psychiatrists and Psychologists in the UK on autism.  It's invaluable work, because we're still living with a lot of myths about autism.  The last 24 hours have seen significant examples of this.  I'd like to talk about these, in this blog.

Firstly, we know that autistic people are most often victims of crime done by non-autistic people.  Murder rates of autistic people are high. Violence against us is high.  Bullying against us is high.  80% report that supposed-friends have defrauded us out of money and possessions. More than 30% of autistic women report that they have been raped.  

Secondly, we know from the newer research that autistic people do not generally lack empathy.  We find it hard to see face expressions and read eye contact/ voice tone messages.  Thus, we may mis-guess emotions.  We also may take a bit of time to process what to say and do about the situation in front of us, so may be anxious about saying or doing the wrong thing and making it worse.  This is not a lack of empathy.  In a recent poll by autistic people, for autistic people, 163 people responded.  58% said they feel extreme empathy, overwhelming, when they realise others are in distress.  33% said they feel empathy in their own way.  Only 5% said they did not feel empathy.  There is no evidence that the 5% are in any way violent.

We should pause here, and reflect on the myth that all autistic people lack useful empathy, a statement I see so regularly that it's quite depressing.  I've seen some colleagues attempt to define this differently, saying that there are different kind of empathy.  There are.  But a lifetime around autistic people has revealed a group that care very deeply indeed.  Huge concern, huge support, huge love.  Huge social justice-seeking, also.  Seems like empathetic action to me, however we describe it.  Me, I am blessed with a family who are autistic and care deeply for me, as I do them.  I am blessed with autistic friends of all genders, IQs, verbal abilities and otherwise, who are cheerful, kind, friendly and caring people.  Many of whom live in fear of some non-autistic people.  Note the word 'some', in that sentence.  Most non-autistic people are great, of course.

I spent a day exploring the case histories of alleged 'autistic serial killers'.  Statistically, far less likely than non-autistic people to kill.  And, in the case of many newspaper reports, they'd invented the diagnosis.  They had decided that a lack of empathy meant it had to be autism.  A lack of empathy is not autism.  A lack of empathy could be sociopathy/psychopathy.  It could be Narcissistic Personality Disorder.  It could be a result of drugs or alcohol misuse.  It could be many different things.  It's not 'autism'.  Lack of empathy isn't even in the diagnostic list.  Truly.  Go and look.

Are a few autistic people also sociopaths?  Yes.
Are some people with size nine feet also sociopaths?  Yes.

Does having size nine feet make you a serial killer?  No.
Does being autistic make you a serial killer?  No.

This is remarkably simple to understand, and yet, some have misunderstood it.

So, what went wrong here?  How did we end up with a set of data that failed to ask the right questions of autistic people?  How did we decide that autistic people lack empathy, or were linked in any meaningful way to deliberate nastiness?  Let's have a look at a couple of examples:

Firstly, questions of morality.  Take the famous Trolley Dilemma.  Imagine a heavy train trolley is racing down a track, unable to stop.  Ahead of it, four people on the rail line.  People are told that they are standing next to an overweight man, and that it would be possible to push him onto the track to derail the trolley and save the other four people.  He would die.  What would you do, they ask.  Would you push the man into the path of the trolley, to save the other four?

They found that quite a few autistic people reasoned that it was better for one person to die, than four.  The researchers decided this meant we lacked a sense of proper morals.  Apparently, the researchers decided that the 'correct' answer is to do nothing, since it's immoral to kill anyone at all yourself (but not immoral to watch lots die, whilst you stand there doing nothing much.  That's a point of view.  Perhaps we should cancel all military service on that basis, mmm?). (That is not a serious suggestion by me - I'm just encouraging people to think).

This is a controversial experiment.  For a start, people from different countries and cultures tend to give different answers to the Trolley Problem.  Also, they noted that many people find the scenario so ridiculous that they giggle, nervously, when asked the question.  And because of the ridiculous nature of it, their answers may be altered by their emotional response to the silliness of it.  We note that when people are put into real-life versions of this test, they respond differently to their previous answers.  We simply don't know how we will respond, whether we are autistic or not.

I asked some autistic people about their responses to this question.  They said it was a silly test.  One might shout for the others to get out of the way.  One might leap in front of the carriage oneself.  Some reasoned that it was indeed better for four to live, than to watch four die.  We had a whole range of careful, reasoned responses, deeply reflective of the need to save lives, of the tragedy that could await, of the moral dilemmas. Of the difficulties for the emergency services, having to deal with four dead bodies... telling relatives, getting over their own trauma.  So much for a lack of empathy.  The question was nonsense.  

In fact, in a recent study of smartphone users, 33% of smartphone users agreed that it's more sensible to kill one person to save four others.  So, are 33% of the population using smartphones all non-empathetic?  Clearly not.  The solution is simply one of a range of possible solutions.

Today, an article online about a serial killer.  A controversial Psychiatrist in the USA stated that he'd never met the man.  But, he had decided that because this chap was antisocial and good with numbers, that must mean he was autistic.  He ignores evidence to the contrary.  He even pretends that autism is a mental illness, which it is not.  He suggests that because he (as a Psychiatrist) has seen some autistic people with psychiatric problems and expressing violent thoughts, that must be what autism is like.  The clue is that only people who are autistic AND have mental health conditions or personality disorders will normally be seeing a Psychiatrist for treatment. Mental health conditions do not lead to violence, per se.  Logically a few people in such Psychiatric settings are also sociopaths.  If he is basing his views in any way on the sociopathic people he finds in his waiting room who also happen to be autistic and also happen to want to kill people, we're all in trouble, aren't we.  Little wonder that this Psychiatrist resigned from his professional body.

It beggars belief that any Professional could say something that meaningless, but, they have.    It's not the first time this one has come up with baffling stuff, and I dare say it won't be the last.  But, the damage is done.  Again.

And, from this sort of baffling lack of clue, we have constructed a hell for autistic people.  

Little wonder that so many autistic people are treated with such contempt and fear, when we go to offer love and friendship, support and skills, information and passionate focus.

Autistic people communicate differently.  Different does not mean sociopathic-of-a-sort-that-will-commit-violence. Non-autistic people have great difficulty empathising with us, research shows.  Does that mean they all lack empathy?  No, it means we are using different social signalling, and need to learn to interpret one another.   We need to understand this, and understand it fully.  

Autistic lives are at risk, and, as a society, we need to be careful about describing autistic people in ways that cause such fear-mongering.  In ways that may incorrectly link serious crime with autism in people's minds.  In ways that misunderstand empathy completely, and assume that different levels and form of autistic empathy equate to crime.  

Frankly, on average, you're safer with an autistic person than you are with almost anyone else.    

There's some lovely studies out there, showing that autistic people are, on average, more moral than others, less likely to commit crime (unless duped into it by others).  One  - for example - shows that autistic children were far more upset than non-autistic children, when seeing someone else injured.  Also, that they would play more fairly with people, even if the people had not played fairly with others.   Generalising, because every person is a personality and a past, not just 'one feature'.

So many autistic people work tirelessly for safety, for justice, for the arts and sciences, for a society where all are safer and more able to be themselves.

I would like to see an end to the awful studies and articles looking to portray autism in unfair negative ways.

Would you?

The photo shows a heart shaped stone, with the word Love engraved into it.

Friday, 6 October 2017

Autism - Being Clear On Mental Health

Autism is not a mental health condition.  And yet, some autistic people are forced into lives so appalling that they develop anxiety, depression and similar.

Others are misdiagnosed with mental health conditions, by diagnostic teams who don't understand what autism is, and isn't.  For example, misdiagnosis as schizophrenia, from asking questions like, "Do you hear voices?".  An autistic person will give a literal response to that.  Of course we do.  When people speak to us, for example.  

We know from the recent Autistica charity report that autistic people are far more likely to commit suicide, after a lifetime of being told we're broken and a disaster for society.  After a lifetime of being forced into environments that are painful (when a few £ spent on changing things would have changed that).  After a lifetime of being treated like monsters and accused of not having empathy (when the reality is that we are as likely to be empathetic as anyone else).

What we have seen is a disaster for autistic people.  A disaster caused by a system that has too often treated us as a nuisance, as something to be removed from society.

What I love, at the moment, is the number of autistic people who are finding a voice.  A voice through social media.  A voice in research, for example the Participatory Autism Research Collective.  A voice at national events and conferences, for example the Autscape events.

What can we do to help safeguard autistic lives?

We can start with respect, and love.
We can start with learning about autism, and understanding that our clarity is not rudeness, not anger.
We can start with assuming competence.

We have had a lot of 'autism industry' who are paid a fortune to treat autistic people as medical conditions to be cured.  Decades later, not only is no-one cured, but a lot of damage has been done.  Autism isn't a disease.  It's a neurodiversity.  Part of the natural spectrum of brain designs.  What on earth have we been trying to 'cure'? 

We are seeing too many experiencing breakdowns after being forced through compliance training regimes.  We are seeing too many who are vulnerable to predators, after years of being told to obey instructions.   We are seeing too many who have reached exhaustion after being told to mask autism at all costs.

I work for a world where there is caring.  Friendship.  Acceptance and inclusion.   Where we work together with allies of all kinds, collaboratively and responsibly.  Each valuing what the other brings.

If that's the future you want, autistic people want to hear from you.  Whether you are a researcher, a teacher, a parent, a friend.  Whether you are a Politician or a business leader.  Whatever your background, you have here two million in the UK alone who are fabulous additions to this world.  On average, more moral than others.  On average, more fair.  On average, more passionate about our specialist skills.  Passionate about art, music, sport, science, academic pursuits, fact every area of life.

Be part of this.

Find out more.   Look on social media for the #actuallyautistic hashtag.  Start the conversation.

The picture shows a person sitting on a boardwalk, looking out over water and forest.  They are on their own.  

Friday, 22 September 2017

No, we are not all 'a little bit autistic', and this is why

Imagine, if you will, going up to a woman who has just experienced extreme sexist comments, and saying to them, "Ah, I know what this is like; we're all a little bit female, aren't we".

Yet, on a regular basis, autistic people receive the comment, "We're all a little bit autistic, aren't we".

Commonly, the person who is telling us this supposed-fact means that they like a bit of routine in their lives (as if this is what autism means).  Or that they are introverts (as if this is what autism means).

Being autistic is a specific thing.  In order to get a diagnosis, we have to fit the criteria.  Desperate need for routine or predictability, in order to avoid our brain overloading with unexpected sensory/social stuff - tick.   Different way of using social communication to most people - tick.  Very literal interpretation of language and rules - tick.

But, being autistic isn't that simple list.  Being autistic is also about a lifetime of experiences.  Experiences of exclusion, experiences of hate, experiences of struggling to access even basic things.  It's also about a lifetime of encountering the world in different ways.  Seeing, hearing, sensing the world around us in ways that are amazing, different, innovative.  It's about having a brain that is wired differently from birth, and stays that way for life (more or less), with all that this brings.  It's about a different culture and language, a different set of social protocols.  For many, a different sexuality and gender ID also.

You're not 'a little bit autistic' because you like your room to be tidy.
You're not 'a little bit autistic' because you like to spend time on your own with a book instead of going to a party.

That's not what autism is.  Autism is us, and it's our whole lives and all that we encounter.

Thank you for listening. 

The picture shows a woman, walking along a track in the countryside.  It has been raining. She is carrying a rainbow-coloured umbrella. For me, it signifies being beautifully different, but alone, a feeling that is all too common when autistic in a non-autistic culture.

Wednesday, 13 September 2017

Autism - Business Strengths

A strange myth about autism and business?  That autistic people are 'out there somewhere', and that businesses have to find ways to include us.  That all of us are some kind of 'worthy charitable inclusion act'. That we are a cost.  I have news; you already have autistic people in your business lives.  They're probably the ones making you a profit right now.

Generalising - as of course every autistic person is different, and non-autistic people do these things too:

Using the internet?  Autistic people built and run that.
Using computers?  Autistic people design and build those and the software.
Using Accountants?  Autistic people are excellent with figures and deadly accurate.

Using Lawyers?  Autistic people are brilliant at memorising thousands of case studies and knowing precisely which laws apply to a situation.
Using Surveyors?  Autistic sensory abilities can detect problems in buildings well before anyone else can.  Autistic 'nonsense-detecting' means you're more likely to get a fair and straightforward, accurate property negotiation.
Using a creative team? Autistic designers, artists, authors are applying extraordinary strengths and abilities to 'think outside the box', to create something amazing.

Do young autistic people have a fair chance of employment?  No.  Most are never given a chance to show what they can do.  I'm working to change that.  I can't change that without being 'out' as autistic myself.   So, I am.  And if you care about young autistic people being given a fair chance, you'll want to support people like me, I'd hope.  Can all autistic people go into employment and do a fabulous job?  No, some have a level of difficulty that means this isn't possible.  Does that mean they are a burden to society?  Absolutely not.  Every autistic person is a person of value, bringing things to this world.  It's definitely not about 'can you make big money'.  But, it's important to say that many of us can.  Even those of us who started non-verbal and sometimes still are.

I run a business.  I'm autistic.  It's our business.  Fantastic team employed.  Offices in the Thames Valley and central London. Is it some sort of charity-supported social enterprise?  Nope.  This is Professional business, fully Regulated, competing directly with the 'big guys'.  And lovely competitors they are, too.  We're blessed with fabulous customers who know that we deal fairly with everyone. We have a brilliant team of Accountants, Lawyers and website gurus who are thoroughly nice, genuine, professional people.  

We love what we do.

"Surely you must be at a disadvantage, being autistic, Ann?', some say.   Nope.  It's just different.  Autism is why we are the only business of our type in the UK that has an unbroken track record of accuracy, to our knowledge (and the knowledge of our Insurers).  An unbroken track record of zero claims for losses.  

Is it sometimes hard?  Yes.  Because we get some myths about autism, and those aren't helpful.  Because we also get a very few people who are just plain prejudiced and who ignore the fantastic track record and decide they don't do business with 'people like that'. That's OK - there's lots of less accurate firms to choose from.  Because we get a very few competitors who think they'll win more business if they tell people some myths about we don't get the work.   Most are lovely, of course.

We love our business, and we love being the 'eyes and ears' of our clients, making sure that they make as much profit as possible, in as wise and moral a way as possible.  

If you find an autistic business, the correct phrase to utter is 'brilliant!'

You'll find any number of autistic people around you already.  Many may not know they're autistic.  Many may have hidden it for years, concerned about whether they will encounter an unfortunate reaction.

Make your own business 'autism including'.  Find out about difference, and about what autism really is (a sensory/social communication difference, present from birth, not a mental illness).  Get some training for the staff.  Brilliant autistic trainers available for that. 

Be clear that you value what people bring, and are relaxed about doing business with all kinds of people.  

Because together, we're stronger.

The picture at the top shows piles of coins, with a red arrow showing the amount of profit a business is making.  The arrow is going upwards, showing increased profit. 

Monday, 11 September 2017

"Autistic People Aren't My Priority" - A Challenge for Christians

Tempting, isn't it - to think that autistic people are 'out there somewhere', perhaps in a care home?  Someone else's 'responsibility'.  Nothing to do with us, in our church.  Well, perhaps we know an autistic child, and sometimes nod in pity at the parents as we pass them in the street?

The picture above shows some of the reality, rather than this set of myths.  It shows a picture of a large church, with arrows pointing to all the contents and activities that could have had autistic input. If you are in a church building, you're in a building pretty much built, designed, fitted out and run by autistic people.  Looking at art or sculpture?  Quite possibly an autistic sculptor or artist did that.  Listening to music?  Very likely you're listening to autistic organists, choir members.   Listening to a sermon?  Is the Priest autistic?  The people in the pews, praying - some autistic.  The people offering welcome and friendship - some autistic.  Every person has something to bring.  Those praying with others - some autistic. The same as anyone else in the world.

Look around you.  In the pews, the woman, dressed neatly and smiling.  Autistic.

Go outside.  See the people sleeping rough under the bridge?  Some studies show 6 out of 10 homeless people are autistic.

Working with groups?  1 in 30 of their number will be autistic.

Autism isn't 'out there somewhere in a care home'.  It's been around you all your life.  You just didn't know the people were autistic.

So, when I hear people in our churches say, "Autistic people aren't my priority - I don't have to know anything about them", I gently challenge them.   What do they mean by that?  What fears or misunderstandings lie behind that statement?  How do we work together to find out how to break down those barriers?   How do we make better use of the fantastic gifts that autistic people bring to every group, if given the chance to do so?  

I am blessed to be working with churches and church leaders in many places.  Training clergy.  Advising on access.  Collaborating on projects.  All as an external consultant, not a formal adviser.  I'm autistic.

 And, one day, soon, I hope, churches will be proud to look round them at all we already do for God and community, and say, 

"Autistic people are my priority".

Thursday, 7 September 2017

Autism: Verbal/Non-Verbal. A False Binary

The strange myths and illogical beliefs around autism include verbal/non-verbal.  The idea that either we can totally not speak, or can always speak.  It's nonsense.

For a start, if we look in the DSM V diagnostic checklist for autism, speech, or lack of speech, isn't even part of autism now.  It's a different classification.

A number of autistic people, me included, also have speech and language difficulties of some sort. 

What do we mean by speech/useful speech?
Do we mean that a child has no ability at all to say a single word?
Do we mean that they also cannot write or type words?
Do we mean that they can speak sometimes to say individual things, but are non-verbal at other times?
Do we mean that they can speak for a short time in a social conversation, then cannot manage to speak further?
Do we mean that they can repeat individual words over and over?   Or, perhaps phrases over and over?
Do we mean that they can put phrases together, for example ones learned from TV or radio, and attempt conversation that way?
Do we mean that their difficulties with speech mean that they cannot defend themselves in an argument, or ask for things they need in shops and at the Doctors?
Do we mean that they have difficulty with some language, e.g. social concept words?
Do we mean that their voice tone and pacing is so unusual that people cannot decode it easily?
Do we mean that they have delayed answers to things - perhaps responding minutes or hours later?
Do we mean that they go to build a friendship with others using words, but it goes horribly wrong?
What do we mean by 'non-verbal', and why are so many insistent on describing language as just this strange binary :  "Verbal/non-verbal". 

Me, generalising....I could sometimes repeat individual words as a young child.  I could repeat individual phrases.  I learned to copy down words and phrases.  Eventually, I could piece together enough words and phrases to write stories.  I could sometimes read out words and sentences, without really understanding what it meant.  Mostly, if asked, I'd hide.  I could also attempt to say very short answers with others, e.g. yes, no, please, thank you.  But in any conversation, up to age 10, I was baffled.  And anxious.  And mostly non-verbal.

I would try to decode what the other person said.  My brain thinks in pictures, so I had to visualise it.  Then, I'd visualise my answer.  Then, my brain would have to try to find the right combination of words and phrases to respond. That took a long time.  Sometimes, nothing would happen - I'd go to talk, and there was no response from my body.  Or I'd say something garbled.  Or I'd say a response so late that it made no sense to anyone; the conversation had moved on.

People thought I was shy.  Or rude.  Or both.  I spent two years in a class in secondary school, and the teacher during Parent Evening had no idea I was one of his pupils.  He had never heard me speak.  I mostly didn't.  I was too anxious to attempt it, because it would go horribly wrong most of the time.

Some days, as an adult, I'm hardly verbal.   Even though I'm an extravert and love being with people, sometimes I cannot speak.  I can nod.  Maybe I can say the short word answers - yes, no, thanks, please.  Maybe I can think of some stock phrases to say.  (Hoping they're the right ones).

Other days, I can talk really well.

Much depends on how exhausted I am.  Whether I feel well.  Whether I've overloaded myself with sensory/social input.
Can I in theory ask for things in shops?  Yes. 
Can I always ask for things in shops?  No.
Can I in theory explain an illness to a Doctor?  Yes.
Can I always explain an illness to a Doctor?  No.
So, am I verbal?  Am I non-verbal?  Yes.  It's a yes to both things.

The moment I'm in a conflict situation with an angry person, I'm stuck. I go to speak, nothing happens.  Nothing at all.  The moment I'm in sensory distress, I go to speak, nothing happens.  The more tired I get, the more I put the wrong words in sentences, or mispronounce words randomly.

I find workarounds.  Making sure I'm in a good sensory environment.  Resting before and after a speaking engagement.  Talking on subjects I know, where I already know what to say and how to say it.

Most people would never know of my struggles with language, because they are unaware of the absolutely huge effort I put into disguising it.

I wish more professionals would understand that autism is not a set of binaries; "high functioning/low functioning", "verbal/non-verbal".  Everything is a four-dimensional spectrum of abilities, which change over time and can vary day by day/hour by hour.

Be aware that some people - autistic or otherwise - will struggle with some speech ability.
Be cautious about picking on people to read something out, or contribute verbally.

Allow people to contribute in ways they can handle.  It might be sign language.  It might be written.
And, be aware that young people who are 'quiet' may actually be struggling to speak.

The picture shows a representation of a group of diverse people.  The ability to speak is just as diverse.

Sunday, 3 September 2017

Pay for Autistic Expertise: Equality, Respect.

The photo shows a hand, with one coin in the palm of the hand.

I've been discussing pay, amongst autistic advocates, speakers and professionals.  It seems that a lot of autistic speakers at conferences are being paid almost nothing, or nothing.

I am speaking from my own position of 'privilege', as an autistic business professional who is paid a substantial sum in outside industry.   I also work within autism, as a national speaker and consultant, from time to time.  For various groups.  Many of those are wonderful, and who treat me and others very well.  So this is not a complaint by me about my own treatment.  Here, I'm using my voice to signal a huge area of general injustice.  I want autistic expertise to be treated with more respect. I know so many fantastic autistic speakers and other professionals who are truly given the message that they are worth nothing.  It has to stop.

Autism Conferences:

There are a number of 'superstars' who command high fees.  Sums in excess of £2000 an event.  Nearly all of these appear to be non-autistic diagnostic professionals.  Or, diagnostic professionals who may be autistic, but are not disclosing this to anyone - so will get the 'privilege' from others that goes with that.

What do I mean by privilege?  I mean that life is often easier for non-autistic people, compared to autistic people.  There is no automatic expectation of incompetence, low IQ, etc.  There is usually no expectation that non-autistic people will accept zero pay "for work experience", as a main speaker at an event.  There are lower chances of assault, abuse, defrauding.  Getting respected as a professional is generally easier if you're not autistic.  Getting book deals at a fair rate of pay is easier.  Getting media performances at a fair rate of pay is easier.  I've had a lot of conversations with Psychiatrists and Psychologists who are autistic, and have never disclosed it.  "My career would be over", said more than one, to me.   Fair point.  I'm not about to force people to disclose autism.  But, in this blog, anyone who isn't 'out' as autistic, I will describe as 'non-autistic', because that is how they are being treated by others.  

(I am very aware that masking autism has its own cost - I did that for too many years, and it was exhausting beyond measure.  Now, I'm positive about autism and the things we bring to the world, and I want others to be positive too.  Taking that step to be 'out' has its own cost.  I chose it, because I want to demonstrate what I believe in.  I'm thankful that I am in position to do so.  Others may not be.  I am working towards a world where there is zero cost for saying "Hi, I'm autistic".  Work with me on that, please, if you can.)  

Let's look at some example numbers.  At a national conference, say there's 400 people.  Lets say they are paying £100 each to be there, on average.  (Often it's a lot more).
That's £40,000.  
The organisers have to pay for the conference centre and food/drink, certainly.  Plus staff time to organise it.  Plus technology.  The usual things.   That costs (say) £15,000.  I also organise conferences.  That's not a guess - it's a fair estimate.   
So, in this example, we have £25,000 'profit' to pay the speakers and help run the charity/company, etc.   That's a lot.

We know that the diagnostic professional non-autistic speaker can command a fee of some £2000+.  At big international events for business, keynote speakers can get anything up to £500,000+.  No, really.   Half a million quid for the 'big guys'.  The famous TV stars, etc.

Guess what the autistic speakers get for a national conference.
I mean autistic speakers who are bringing equivalent experience.  Equivalent expertise.  Equivalent new research.  Equivalent time and training skills.  

On average, about £200, it seems.  Was that your guess?
Often, only travel expenses.  Or a book token.

It takes several days of time to prepare for a conference.  Research, slides, background reading.  The travel time.  The time there.  The time to recover.   All for a book token?

Better than that, the non-autistic 'keynote speakers' often get their own room, their own dedicated staff.  All the autistic speakers get to share a not-as-nice room together.  The non-autistic speakers even get business-class flights paid for, in some cases.  Lovely.

The billing for the event will often read, (summarised...)
"Come and see the amazing Non Autistic Keynote Speaker.  They have written books, done TV shows, they're amazing!"
(Oh, by the way, some autistic people will speak too - I think one of them is called Sid, oh wait, no, perhaps I mean Fred, not sure, but they'll talk to you about maps or something for a few minutes)."

I exaggerate only slightly.  Oh my.  Can you imagine going to a conference on, say, women.  There's the keynote speaker: "Come and listen to the Amazing Man speaking about women!  (Oh, by the way, some women will speak too - not quite sure what they'll say yet, but isn't it nice of them to turn up - we'll give them a round of applause for doing so).  I bet you'd be horrified.

Be horrified.  Because you're often watching that happen, in conferences about autism.

"But people won't pay to listen to autistic speakers, Ann", say some organisers.  "We need the money, and they will only pay big money to listen to non-autistic diagnostic people.  We can't afford to pay the autistic people a lot.  It would take out all the profit. "

Absolute nonsense.  If you can't afford to pay people, put the price up to a level where you can afford to pay them.  Jolly well make sure people respect and appreciate the expertise of the autistic professionals in that room.   If you have £3000 to pay all the speakers, do not give £2000 to just one person, and £100 each to the others.  Pay them all a reasonable sum by dividing it more evenly. It's not hard to find solutions that are respectful and appropriate.

The reality is that most non-autistic speakers are not saying anything from lived experience. Yes, they have met a lot of autistic people.  They borrow our ideas and make money out of them, a lot of the time.  And...their work is often 'medical model', in most cases.  What do I mean by that?  I mean the idea that autistic people are patients, in need of fixing.  Possibly to be paraded in front of the audience as examples to show how marvellous the diagnostic person is.  ("Living zoo exhibits"). Nothing more.  It lacks credibility in what is now one of the fastest growing, most dynamic and pioneering fields of human justice and equality.  

Autistic people have our own 'voices', whether spoken or through technology.  So many are on low pay because they are taken advantage of, not because they have no skills, no expertise.  So many are trapped on benefits, unable to earn more than a token sum without ruining their benefits pay...and never given the chance to earn a living wage.  Not by any of the multi-million-pound industries that benefit from 'therapies' and 'information' about us.  Extraordinary.

We have our own expertise to bring to events.  National professional-level speakers at major events who are bringing the very latest research, from actually-autistic people, as actually-autistic people.  And, the voices of those who are talking about their lives are of huge worth.  The cost to them, of standing on that stage, revealing such personal and possibly humiliating detail, can be huge.  Days of preparation.  Days of recovery for some.  To be paid nothing?   Or a token bus fare and a book voucher?  Is this how you want your own young autistic person to grow up, thinking that's all they are worth?  Of course not.  "But who will look after my child when I die?", so many parents say.  Your child could, in most cases, look after themselves, financially - if only we would invest in making life doable, and in paying autistic people a living wage for equivalent work.

Many attendees at conferences have been taught that only non-autistic diagnosticians are worth paying for.  They hear it from the organisers, and they believe it's true, I would say.   It isn't true.  Hearing from diagnostic professionals can be a great thing.  Learning from therapists can be very valuable.  But, if they had the answers, why - 20 years on - are we still in the same 'low-pay, high-abuse' zone, as autistic people?  It's because we are failing to value autistic people as people, in my view and experience.  As people worthy of respect.  
Do some people work for nothing, for friends and charities, by choice?  Yes.  And, if it's by choice, that's fine.  I do, sometimes. Anyone, autistic or not, could make their own personal decision not to be paid, or to get a low fee.

What this multi-billion-pound autism industry is often doing is basically lying to autistic people about pay.  Making autistic people work for almost nothing, pretending it's all they can afford.   Well, that's exploitation. 
If our conference organisers are telling attendees that only non-autistic people are worth paying, that's prejudice.

It's injustice.  We should not be supporting it.

Next time you go to book a conference, ask whether the autistic speakers are being paid a rate that reflects their time, effort and expertise.  Perhaps don't attend events where we are on stage as 'zoo exhibits' for a non-autistic person to use to make themselves look great.  Or which show autistic people only as alleged patients to be fixed.  We are not ill-with-autism.  This is a neurodiversity.  Yes, some have multiple disabilities/conditions as well as being autistic, and for them, life is very tricky.  I'm talking specifically about autism here, though.

If you are a superstar non-autistic speaker, reflect on the message you're giving to others.  Are you showcasing the skills and talents of autistic people?  Are you 'boosting' the voices of autistic fellow professionals?  Are you demonstrating really good co-working, skilling people up to work alongside you?  Making sure they are treated fairly?  Use your power. Use your privilege.  Help change the view of the world with us.

Autistic people need to live.  We have bills to pay.  We don't live under hedges and eat berries between conferences; We're not all in 'care homes', wheeled out for conferences.  Only 1.6% of autistic people live in supported accommodation.  I bet you thought it was more than that.  Most of us have apartments, houses, families to support.  We need to buy clothes, food, toiletries, same as you do.  No, a book voucher will not buy those things.

Pay good autistic people.  
Because you don't want a future where your child is worth nothing.

Thank you for listening.