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....
Great.
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.
None.

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.  

https://www.theguardian.com/technology/2017/oct/07/the-party-a-virtual-experience-of-autism-360-video 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, writing...in 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.