Behaviour: On Trying To Change Autistic People

I'm going to talk about autism.  Specifically, autism.  Not separate speech/language conditions.  Not learning disability.  Not mental health. Not personality disorders.  I will also generalise throughout.

I'll use the US diagnostic list for autism.  DSM 5.  If we re-translate it into autistic community language, it reads rather more respectfully.  So I shall do that:

a) We use body language differently to other people, including eye contact.  Eye contact is described by most autistic people as painful, overwhelming, as stopping us listening to others if we have to do it.  We do not stare into eyes to convey meaning.  Ours is a different body language and eye contact system to yours.  We understand the body language of other autistic people.  We don't understand yours too well.  Our way of detecting emotion, and displaying empathy, is therefore different.  The same is true the other way round; most non-autistic people are rubbish at interpreting our use of body language and eye contact.  Most non-autistic people are rubbish at empathising with our emotions.

b) We use conversation differently to other people, for example to add information, not to use 'social lies' to improve our social status and group popularity.  For example, "Oh you look so well!" when the person doesn't look well.  Whilst appreciating that telling minor lies to one another is a standard way of interacting for many non-autistic people, we just don't do that.  It's very bizarre, frankly.  We build friendships differently to that.  We also don't need to be a higher rank than other people.

c) We play differently and socialise differently, often preferring to work in parallel to others, not facing them.  Our hobbies are our intense interests and specialisations that go on to become our passionate expertise and possible careers.

d) We may repeat words, whilst we are learning them.  This is because of the difference in brain wiring.  Being able to hear the words again allows us to process them.  Or we may use a different communication system completely.  Sound, picture, movement.  In the same way as a Deaf person using Sign Language will use their hands and body, face expressions and eye contact differently.  We do not tell Sign Language users to keep their hands still as it's embarrassing. Well, I hope we don't. I leave you with that thought...do think about it...

e) We may use our bodies to help us 'map' our surroundings.  In the same way as some animals use sound to locate things, we may use repetitive sound to do the same.   Or we may use our hands flapped in front of our eyes to help our eyesight judge distance (which we do differently to others).  We may use rocking or flapping as a way to sense where our body is at the moment.

f) Most of us have extreme sensitivity to some sensory things, and this may result in us experiencing particular lighting, sounds, smells, textures, pressures, temperatures etc as extremely painful.  Or as extremely cheering.  Ours is a different sensory world.  We will need to move away from painful places.  So would you, if you were in pain.  It's quite a normal reaction, isn't it.

So, that's autism.

Nothing about lack of empathy, or violence, or low IQ, or self-harm.  Odd, isn't it, because we get a lot of people who tell me that Behavioural Therapies are vital...to improve empathy, stop violence, stop self-harm, and improve IQ.   I'm probably pleased to think that this would work, but that's not autism.  That's a whole different set of things.  Yes, some autistic children may have those too.  The same as some children with red hair may have them.  Or some children with size 5 feet.  Or some children who are Black.  Or some children who are white.   Those things  - violence, self-harm, etc, are not criteria for autism.  It's true that if an autistic child also has some of those other things, they're very likely to get diagnosed faster...or indeed diagnosed at all. Autism by itself is very law abiding, moral, honest, fair.  Generalising.

So....what do we mean when we say '...this behavioural therapy will help my autistic child'?

Do we mean that the team are going to coerce the child to socialise entirely in ways alien to an autistic child... instead of encouraging them to find friends who 'speak their language'? to make them socialise even when exhausted and in pain, desperately needing a break?   Or do we mean they are teaching them how to interpret the language and culture of the non-autistic people around them?   And teaching the non-autistic people how to interpret the language and culture of autistic people?  Developing mutual respect for difference, and mutual understanding of those differences?

Do we mean that we are going to coerce the child to give up their passionate interests, their specialisms, and do the things that please us instead?  Or to find ways to use that skill set? I was told to stop focusing on horses and maps for so many hours.  I went on to run a Surveying company, using maps, valuing equestrian property.  Go figure...

Do we mean that we are going to prevent the child from learning language in their own way, e.g. repeating words, in order to make it easier for ourselves to be around them?

Do we mean that we are going to prevent their natural movement, their way of sensing the world around them by using their bodies...their way of staying calm and realising where they are....?  

Yes, if a situation is unbearable for someone, then something could do with changing.  Does it have to be the autistic person that changes?  Serious question.  Many therapies assume the answer is always 'yes' and that the autistic person must always be the one who changes by 100%.  Is that true, though?

I'm all for respectful therapies that treat autistic people as whole people, as people with a different way of being, a different way of interacting.   Who treat us with the same respect as they would a Deaf person using sign language, and allow us to use our bodies and our signalling in our own best way.   Who teach others about us, instead of making us do 100% of the adapting, 100% of the change, no matter how exhausting it is, no matter how spirit-crushing it might be.  No matter how many tasty treats are given as a 'reward' for giving up all that we are.

You see, if I am in a world that says to me, "Ann, everything you are is wrong...", and I am taught that I must be entirely not-me, in order to please you....how respectful is that?  Who has 100% of the power here?  100% of the control?  Why do so many autistic people end up committing suicide, after a lifetime of hearing how 'wrong' we are?  That's a serious question, too.

If you believe your child is in a respectful setting, where their autism is valued, encouraged, and they are given the skills to use their bodies and communications their best autistic way, great.  I'd support any therapist who starts from that basis.  I look for settings where teams know that some 30% of autistic people are LGBT, and respect that.  I look for settings where teams know that autistic people communicate differently, and are able to communicate our way also, when needed.  I look for teams that include autistic people.

If you or your child's team are confusing autism with a lack of empathy or a tendency to violence...and convincing themselves that the therapy for these is treating 'autism', you need to have another look at the diagnostic list.  

Certainly, we need to make sure that every child and adult of every sort is safe, and well, and able to learn basic self care skills where possible.  To stay safe and to find the right friends and the right path for themselves.   Any good, respectful parent, teacher or therapist will want those goals.

Erasing autism is not a goal that anyone should aspire to.

You are blessed with a wonderful child. Someone bringing something different to the world.  If we take the pressure to conform off of them...and the pressure to endure impossible social and sensory situations...and we learn about autistic difference....let's see how brilliant that shared journey of life can be.

Thank you for listening.

[The picture at the top shows a grid of identical pawn pieces (of the sort you might find in a basic chess set), shaded red.  Amongst them, one white piece.  It signifies someone who is different.  Should our response be to colour them red?]

Autism, ABA and PBS: Some questions

The picture above shows a slice of brown granary bread, spread with peanut butter.

The picture below shows a peanut butter sandwich made from white bread, with the crusts cut off, and with strawberries and grapes on the white plate.  There is a salad garnish on another plate.

Why am I showing you pictures of peanut butter sandwiches and spreads?  It's going to be an example.

Supposing you are made ill by eating peanuts.  You go to see someone, and they offer you the slice of brown bread with peanut butter on it.  "But I can't eat peanuts - they make me ill".  "Oh, I'm sorry,", says the person, "In that case, how about this sandwich instead?"  They offer you the white bread peanut butter sandwich with the fruit.   "But that's peanuts too.  I can't eat peanuts - it makes me ill", you re-explain.  

"This is different", says the host.  "It's not the same thing.  It's got additions, and it is differently arranged. The crusts have been cut off. It's different bread.  It is definitely not the same as the other peanut sandwich".

Are they telling you the truth?  Sort of.  It's not the same as the other sandwich, true....but...

Would you still be ill if you ate it, if you are ill after eating peanuts?   

Yes, you would still be ill if you ate it.  It still has peanuts.

Rearranging ingredients and putting fancy things with it does not change the basic fact.  

So, let's look at another interesting one.  Autism, with Applied Behaviour Analysis, and with the newer versions of Positive Behaviour Support.  I'll call them ABA and PBS.

Both are behaviour modification schemes, designed to analyse the behaviour of autistic people...and change the behaviour.  Both are based on Applied Behaviour Analysis.  We know this from the materials produced by the ABA and PBS specialists.  In the journal, "The Behavior Analyst Today (Vol.10, 3&4) we learn that, "The science on which [ABA and PBS] are based is the same....  The same technology of behavioral science is used by both groups...  We all utilise common procedures...PBS is a natural extension of ABA...the conceptual care and values of PBS and ABA are the same. (Dunlap et al, 2008) "

The National Autistic Society in the UK recently advertised a job in one of their schools.  "Behaviour Co-ordinator; Education and Certification - essential.  A minimum of a Professional Diploma in PBS or equivalent.  Examples of equivalent qualifications are MSc Post Graduate Diploma Analysis...and MSc Post Graduate Diploma Applied Behaviour Analysis".

The two things are equivalent, according to the biggest charity in autism in the UK.

If we look at the training for PBS, it asks the students to study ABA.  The books are ABA.  The materials are ABA.  And there are some additional things as well.  A quick search of the internet reveals endless other sources within the ABA industry explaining that PBS is a variety of ABA.

Look at the picture of the plate, above.  There are some additional things on the second plate of peanut butter sandwich.   Does adding the other things mean that the person is going to be OK with the peanut butter, this time?   Does adding the other things  and calling it PBS mean that PBS is a different thing now, therefore OK?  

What about if we made the peanut butter sandwich smaller?  Would that make it safe to eat?

What if we make the ABA component smaller?  Does that make it safe for autistic people?

Let us remind ourselves of the words of a main founder of ABA, Mr Lovaas.

"You see, you start pretty much from scratch when you work with an autistic child.  You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense.  One way to look at the job of helping autistic kids is to see it as a matter of constructing a person.  You have the raw materials, but you have to build the person".  

What a very interesting starting point that was.  Not really a person? Am I not?  Is my son not a person?  My friends?  My colleagues?  None of us have had behaviour therapies.  Perhaps we're therefore not people....?

When I look for a good therapy, I look at how respectful it is.  How much it values the equality of autistic people.  How much it values what we can teach others, what we can bring to society.  How much it makes itself accessible for autistic people to lead that therapy, to teach, to write, to create. Whether verbal or non-verbal.  Whether of high IQ or any other IQ.

I've made quite a study of ABA and PBS over the last couple of years.  I know a good number of ABA and PBS practitioners.  I have seen the methods.  I have the training materials.  I have the books.  I have seen the course content.  I'm a professional, working in autism, and autistic.  I work at strategic level with major organisations. I was a Director of well regarded autism company, whose team include many of the top professionals.  I have trained the Royal College of Psychiatrists, alongside my fellow autistic professionals.  We train Psychologists, Psychotherapists, schools, colleges, organisations across the country. We haven't just arrived, new on the scene. We  know what a good therapy should include, (collaborative working, deep understanding of autism, Human Rights, changing the attitudes of those around autistic people) and what is a really bad idea (forcing 100% of the change to come from already-exhausted, and already-distressed autistic people).

I have the current 'best practice' guide for Positive Behaviour Support, used for training the PBS practitioners. In it, one vague and worrying reference to trauma being at the heart of many autistic 'behaviours' - but so vague is this reference that they refer us to a 2012 book designed for learning disability, not autism.  They have simply no idea what the link is to trauma, and they offer no guidance whatsoever.  There is a solitary reference to aids such as noise cancelling headphones, considered a vital beginning for many actual autistic people.  No reference to co-occurring conditions such as Restless Leg Syndrome or Ehlers Danlos Syndrome, both of which can mean the individual has a medical need to move, regularly. Or may have enormous difficulties maintaining one position for any length of time. Simply unexplored.

I think I shall echo the words of the National Autism Project, in their report, "The Autism Dividend":

"Positive Behavioural Support in the form of 'active support' may work for some children and families - but this approach is not suitable for everyone, and indeed is not without controversy".

In fact, as far as anyone can tell, there has been no good long term independent research into the use of PBS and autism.  We have no idea what the impact is of using this behaviour modification approach on autistic individuals in the long term.  It is approved for use with learning disability, and has therefore been assumed OK for autism. But autism is not learning disability.  Autism is different.  Very different indeed.  I've read so many examples of PBS assuming that a child has to be taught to socialise in non-autistic ways.  Taught to socialise through every lunch time, every break time, every after-school event.  If they can socialise just like they're not autistic, they're 'accessing the community', and that is the goal.  "Indistinguishable from our peers".  Perhaps allowed a tiny flap or rock, if that's not inconveniencing anyone else. Did they even want to 'access the community' in the prescribed ways?  Autistic aims and ambitions are different.

Of course, some ABA and PBS practitioners use a set of techniques that doesn't include the problematic core beliefs and aims.  Their version isn't really ABA or PBS at all.   That's not what I mean.  Of course children or adults who are doing something dangerous need to do something that isn't dangerous.  No-one is questioning that.   That is not the subject of this discussion. This discussion is about which approaches are respectful, effective, and appropriate for autism. In collaboration with, designed by, trained by, actual autistic people.   We should be involved in every step of designing and applying therapeutic approaches.

The ABA industry redefined 'dangerous' to include a child putting their head on their shoulder, or moving their fingers, or moving an object a few inches, or stepping over a line on the floor (the latter rebranded as 'elopement').  All of that is recorded as evidence of 'success' if prevented.

The US Government reports that the vast majority of parents can't see any meaningful change.  Little wonder, eh.  https://www.altteaching.org/wp-content/uploads/2019/11/TRICARE-Autism-Report.pdf

I understand that the Westminster  Commission in the UK was looking at this matter.  I would suggest that ABA and PBS needs some very thorough and continuing research.  Because we are gambling with the lives of an awful lot of children.   The suicide rates for autism are already stratospheric.  I note the legal cases in the USA from some individuals who believe they were deeply damaged by some therapies.  If we're wrong, and we are in effect doing the same thing as the highly discredited and damaging 'gay conversion therapy'.... we are setting an awful lot of children up to have serious consequences later in life.  No matter how 'positive' the title of the product.  If an autistic person wishes to have ABA or PBS, and it is their personal, considered choice, great.  No problem with that.  

How sure are you that this the right therapy?  I shall leave you to investigate for yourselves.  Read the words of autistic adults who have expressed their views on ABA.  http://neurodiversitymatters.com/autisticacademic/2017/03/16/another-blog-post-on-how-aba-ruined-an-autistic-persons-life/ is one example of thousands. https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/ is another. Some are more positive about it.  But it depends how confident we feel in saying that the many negative accounts are not important.  It depends how confident we feel that the local offering has nothing damaging in it.  With so little research, we're guessing, I would say.

https://theaspergian.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/ may be helpful also.

Decide if adding things to ABA makes it harmless.   If the 'key ingredient' of both systems is the belief that we are (in effect) behaviours that need to be modified, to make us like other people, is that a good thing?  On what set of measures is it a good thing?  Are autistic people broken versions of 'real people', or are we a neurodiversity?  ABA and PBS largely assume the former.  The emerging autistic communities assume the latter.

Was it a good thing to make gay people pretend to be straight?  To ensure that they had access to the straight community and could lead 'normal' lives?  To 'prevent them being bullied'?  To 'ensure they could have the same things as others'?   No.

Is it a good thing to make autistic people pretend to be nearly completely non-autistic.... by rewarding them a lot if they pretend to be neurotypical,....  and 'extinguishing' any autistic behaviours that non-autistic people don't approve of?  By setting them goals that apply to non-autistic people?  Yes, we all need to be able to access basic things.  And there are a lot of different approaches that enable that.  Most of which are not ABA or PBS.  

If you say to an autistic person, "This is a good thing", and you are a professional in a position of power over them, are they going to trust you?  Are they going to agree with you that it must be a good thing?  After all, you said it was.  Very literal people, autistic people.  Very likely to assume that others are saying things that are accurate.  Very likely to believe them. Generalising, of course.

That's a lot of power to have over autistic lives, isn't it?

The Autistic Not Weird website by Chris Bonnello ran a major survey with thousands of respondents.  https://autisticnotweird.com/2018survey/ This is a typical example of the findings around ABA-based therapies.  Less than 5% of autistic people approved of their use on children. Do we hold that almost no autistic people know what's good for them?  That must be our assertion, if we are to ignore this.  How confident are we with that assertion?

I leave you with those reflections.  And I look forward to professional discussions with colleagues nationally on this subject.  

We need better answers than, "PBS isn't the same as ABA".  

That's not good enough.

Seek out respectful answers.  Listen to autistic people on what matters to us.

Thank you.

So who counts as 'Autistic Enough'?

Yet again, this week, the international autism communities have seen a parent claiming they know what 'real autism' is.  A parent, this time, who is head of an autism charity.  Not in the UK.

They have invented a picture to go with it.   I have disguised it here, to respect the privacy and lives of the people that the original author put on it.  But it gives you some idea of the shape of it.  

They liberated internet photos of a lot of well known autistic people.  Then, presumably without their consent, allocated them a place on the graph.  Each person got rated as A1 to E5, based on "social-adaptive functioning" and "intellectual disability".  The A1 people (top left) had no intellectual disability and were declared pretty much normal in their 'social adaptive behaviour'. "Borderline".  The author simply guessed whether they had good 'social-adaptive functioning' and put anyone who could talk into that category, as far as I can see.  The E5 people (bottom right) were declared intellectually disabled and aggressive and unable to do 'social adaptive' stuff.  Hmm.  Look at the graph.  Which categories would a newcomer to autism think were the most common?

I've added a red circle around nearly all of the photos.  The purpose of this will become clear in a minute or two.

Let's have another look at this. A different graph.  This one, mine.  It's only an illustration.  It doesn't represent specific people.  Suppose we take, say, 1000 autistic people.    We create a graph, showing how strongly they have a couple of autistic characteristics on a particular testing day.    Every single dot on the graph is an autistic person.  They're all autistic.  I can't stress this enough.
But...supposing the ones who are given a green dot are ones who also happen to have an intellectual disability.
The author has , apparently, decided that only the people with the intellectual disability are properly autistic.  The rest, only borderline.  I've put in a red circle, below, picking out some of the autistic people who have an intellectual disability as well.  I'm going to declare those to be Properly Autistic.  Quite randomly.  The rest?  I'm going to declare them to be borderline autistic, also randomly.  Why not.   It doesn't have to be based on anything other than my whim, after all.

Anyone see the problem with this?   Yes, it's nonsense.  They're all autistic.

Look again at the first picture.  That red circle is all the autistic people who (the author believes) also have an intellectual disability.  Look at how many autistic people she has decided fit in that category.  Nearly everyone who is autistic, it seems.  Look at my chart. That's nearer the reality, in that red circle  No, truly.  I did some background research on this.

Intellectual disability is not autism.  It's not part of the criteria for diagnosing autism.  It is a separate thing.  And people who also have an intellectual disability are people, fabulous, deserving of every bit of respect and love that is due to every person on the planet.  I don't want anyone analysed and put into a 'category E5' or any other category. We're not categories.  We're humans.  Would you want to be declared an E5 human?  By a passing parent?

As for social-adaptive functioning, that's not even a term used for autism.  Those are two separate things.  Social functioning measures how well we can copy and interpret non-autistic behaviours. Most of us are great at copying and interpreting autistic behaviours. It's a different language, not a deficit.   What if we had a chart to show how well non-autistic people can copy and read our autistic language? it would declare pretty much all of them as 'deficient'.  Should we do that instead?  Indeed not.  It would be disrespectful.

Adaptive functioning?  Gee, I'm going to have to guess here.  Is it to do with life skills?  That depends, moment to moment, for nearly all of us.  I can do a lot of things just fine.  Others not.  But the things I can do just fine?  I can't do them all the time.  It depends on circumstances.   It's a variable.  Some days, I'd score on the right of the author's weird graph.  Other days, the left.  Others, in the middle.  It's meaningless.  Which skill are we even talking about?  I might be able to talk one day, but not the next.  I might be able to cook a meal on Monday, but be completely unable to do so on Wednesday.  Put that on a chart.  Go on, have a go.  You can't, eh?  Quite.

We need to move away from thinking we have the right to liberate photos of people we don't even know, slap them on a graph, and declare how autistic they really are.  Based on a category that isn't even autism.

It's disrespectful.  It's inaccurate.  It's unprofessional.  It's misleading.  It's harmful.

I hope that's clear.

Thank you for listening.

Autism and Cancer Treatments

About 1 person in every 3 will have a diagnosis of cancer, at some point in their life.
That applies to 1 autistic person in every 3 also.

I did.  In early 2011, I was told that I had an aggressive type of breast cancer.  I am talking about it here because many healthcare teams currently lack knowledge of autism.  And the success of treating autistic patients relies on teams knowing enough to make it doable for us.  And knowing that we may respond differently to medication - but that's another topic.

I'm not a great fan of using me as an example.  But, this is important.  It may save a life or two.

The journey, for me, started with a 14 month endurance course...through painful and scary test after test, scan after scan. An operation to put in a chemotherapy-delivery-device under my skin.  Eight lots of very powerful chemotherapy.  (Which, oddly, I didn't find so bad).  Surgery.  Radiotherapy.  Herceptin given in hospital every three weeks. (This supposedly milder drug hated me).  All the visits to maintain the under-the-skin port.   The re-tests, re-examinations, re-scans.

I was left with the usual end result; total hair loss, exhaustion, nerve damage from the chemo.  The possible long term effects of all of that treatment are still fairly unknown to medics.  Mine have included a heart that has developed an electrical fault... permanent nerve damage to hands and feet, pain from the surgery, an absolute dread of anything medical...and (to add to the excitement) last year, a further local tumour,  caused probably by the radiotherapy itself....so more surgery.  That one was rare enough that it had to be diagnosed by the sarcoma specialists after many weeks of testing, in case it was an even more dangerous form of cancer.  Thankfully it was not.  Three months of sickening dread.  I'd run out of ways to 'do cancer'.  I just couldn't imagine how to do it all again.

Breast cancer doesn't have a 'cure'. A lot of cancers don't.  No sensible team member is ever going to say, "You're cured!".  The best they can say is, "No evidence of disease", because a lot of cancers are good at hiding, for years.  If you've not been a cancer patient, there isn't a way to explain the emotional impact.  You're not cured.  You go from year to year with more re-testing to see if it's back.  

More research is emerging on PTSD, on possible long term cognitive difficulties, on long term pain and other side effects.  We have almost no research on how that alters when the person is autistic.

It's long journey.  It starts with that first shock of the possibility of cancer...and it continues for the rest of your life.  Yes, the odds of the cancer returning get lower and lower, which is good.  I had a lovely team, at the start, which is also good.  But I can safely say that the net effect of all of it was so traumatic for me that I wondered whether it would have been kinder to have just killed me.  I've wondered it a lot, actually.  I am of course pleased to be alive so that I am with my loved family and friends.   But...even so....

That may sound like a terrible thing to say.  In fact, some friends have been outraged.  Yet, it's true.    And we have to understand autism to realise the double impact of much of this.  At the time, I got through a lot of it on 'automatic'.  Autism's ability to not process emotional impact at the time can be a blessing.  But, it catches up with us eventually. Well beyond the timescales most medical teams expect.  And beyond the timescales that friends, family and supporters expect, too.

The picture shows the difference between a medical room that others might see, and the medical room as I see it.  It can only show one element - the colours.  Under fluorescent lighting, it looks like a strobe light, a kaleidoscope of colour to my vision.  Autistic people process sensory information differently.  Each person will have their own profile for this. The noise in a hospital, deafening.   The smells, overpowering.  Standard checkups involving a lot of prodding and examining, which registers (for me) as intense pain.  Things are already difficult for others are torture beyond words for a lot of autistic people.  Torture that so often ends in PTSD-like end results, and someone who can no longer engage with healthcare.

Especially in a system that is so vague.  "Come in for an appointment at 9am, Ann".  Except, sitting in reception at 9am, there are still five people to be seen before me.  I'm under fluorescent lighting, in intense noise, intense odours, dreading the random, unknown examinations ahead of me....desperately practising what to say, what to remember....and the clock now shows 9.15....9.20.....9.25....9.30....9.50....10.15....10.20...10.40...the panic is beyond explanation.
My brain is now unable to remember words and ask good questions.  I'm now in 'total automatic' mode.  "How are you, Ann?"  "Fine thanks"  "Any problems?" "No, none thanks".
Those aren't the correct answers.  

I'll repeat that again - those aren't the correct answers.  

Those are all my brain can remember, and all I dare say...in case someone does something else painful to me, whilst I am already now in intense pain. The thing is, I mask.  I don't shout, scream, run, or look angry.  I mask.  Like most autistic people, I have learned that I must smile and be nice, or bad things happen.  Smile, be nice.  Smile more, be nice more. Smile and smile.  And the worse things get, the more I smile. The more jokes I try to make. 

The only indicator is my blood pressure, which starts to go 'through the roof' to use a phrase.  It has to be catastophically bad before you will see me in tears, or totally non-verbal.  The teams saw both.  But, they see a lot of people in tears and didn't realise that was a sign of catastrophe for me.  They were unaware of autistic difference and my profile.

Teams, if you have an autistic person in your clinic, and you have left them there way beyond their appointment time, you will usually get total nonsense as answers.  If you are relying on those answers, heaven help the outcome for that person.

We need to take autism seriously.  As seriously, in hospitals, as we take someone being a wheelchair user or Blind.  Yes, I'm very well aware that my friends who use wheelchairs, or are Blind, also often have a tough time.  But often there is some understanding of what a wheelchair is, and that it can't go up stairs... and what 'blind' means.   I lost track of how many times I said, "I'm autistic", and the medical person just stared blankly at me.  "What do you do, then?", said one, confusingly.   Er.....mmm..... <wondering if there should be a special song and dance involved>

I have had 20 minute discussions with receptionists who say, "No, there's no way you can wait in a room without fluorescent lighting.  No, we can't contact you if you wait outside.  You can't access the toilet block because the smell is making you keel over with sensory assault?  Too bad. There's no way I'm letting you use the accessible one.  That's for wheelchair users."  "No, you can't have first or last appointment...".  "No there's nothing on the system to say you're autistic or what you need....Well, you may have sent it all in three times, but it's not here".  All whilst standing in sensory hell.  By the time I have negotiated that, I can't speak when I'm in front of the doc.  If I can, we're back to 'automated answers' again.   Almost everything is a battle.  And a battle autistic people are not set up to win.  I'm grateful for a GP who understands.  But, getting to see that GP....it could be weeks.  

I often had to train the staff, as well as being the patient.  Whilst terrified, and in pain, and sometimes non-verbal.  The staff were often very nice.  That's not the point, though.  This isn't a neurotic attitude; it's sensory pain and social exhaustion resulting in intense brain overload.  A physical outcome, not something in need of reassurance.   Sometimes 'very nice' is its own problem.  A comforting hand on an arm can register as intense pain, for some of us.  It helped me...but the teams simply had no idea that it might have been a problem.  Nor the intense eye contact, the 'reassuring' soothing chatting...

The heroes, on medical teams, for me, were ....The breast care nurse.  She was fabulous.  She knew I liked hugs.  She hugged.  It was like an oasis of care and humanity, in the middle of sensory hell.  (No, I don't like being hugged by total strangers.  I knew her, I trusted her).  And my surgeon, who is a total star.  And my original oncologist, who was simply so kind and reassuring.  

There are 'hospital passports' available now, so that we can write down what helps, and give those to each person we see.   Search online for 'autism hospital passport'.  But....if you're a cancer patient, every visit could mean seeing 3-10 different people each time.  3-10 different people who each have to read the document, and take note of it...whilst looking after all the others.  Guess what happens, in reality.

We need teams to have proper training on autism.  Truly we do.  Not just for cancer, of course, but generally.  Teams that include the front line staff, the first-contact people.

Too many autistic people die very very early. We know this from the Autistica charity research recently.  On average, 16 years early.  Too many cannot access healthcare, at all.  It can be as inaccessible as putting a clinic for wheelchair users at the top of a flight of steps.  

None of us need to have a much greater chance of dying from cancer.  Or anything else.

Let's work together to find the best answers.
An appointment system that allows us to have a set time...first appointment?
A safe quiet place to wait.
Or a text to say, "Come in now  -  the doc is ready to see you".
Or a known trained contact who can interpret and assist.

I am glad to work with hospital staff, providing training and answering questions.  The team at Autism Oxford UK does a lot of this kind of work, using autistic professionals who can speak at first hand about our experiences.  Other good autistic training teams exist, of course.

If you want to save a third of the 2 million autistic people* in the UK from a horrific set of experiences with cancer, or other major health conditions, make that call.  Look at your budget.  Authorise that training.

Did I learn anything from having a very deadly form of cancer?  Yes.  I learned who my real friends are.  They're still in my life.  

I learned that actually, it doesn't matter if you're not young with a size 10 perfect body.  And people who are only interested in you if you fit that profile are not friends at all.  Now, I get to each birthday and think, "Wow!  Made it!"

I learned how precious every single day of life is.  And that sometimes pain and fear actually is unbearable...and that's OK to admit.

I learned how unshakeable my faith in God is, no matter what the likely outcome (and how important it is to offer autistic people their choice of following a good faith, if they so choose).   

And I learned not to take nonsense from people any more.  Because every moment of my life is a moment I never thought I'd see.  Who knows how much life may be still granted to me. Lots, I hope.  But I don't know.   I know I won't waste it with people who just want to waste my time and use me or my autistic friends for their own 'agendas'.

It's led to some good decisions.

Would I go through it again.  No thanks.

Thank you for listening.




*Yes, it really is about 2 million.  See the US research showing it's 1 in 30 children whose parents have been told their child is on the autism spectrum.  Ask teachers - there's about 1 in every class of 30. There always has been.  But we were rubbish at diagnosing it.

Non-Binary and other gender variations - An autistic majority?

http://cassolotl.tumblr.com/post/156598069500 

I'd recommend people have a look at this fab survey.  Here's a summary of one of the pages.  Over 1300 autistic individuals were asked questions about their gender and sexuality.  It was a self-selecting survey, from a person's social networks, so it is useful for discussion, not a 'final answer'.  But what a great discussion this is.  

We know from other research that some 30%+ of autistic people self-identify as part of the LGBT+ community.

But is the statistic that low?

The link will take you to the data.  The picture above shows a snapshot of it.  Some gave more than one answer.  

Truly a diverse group of wonderful people.

To give one example, "Non-binary"; identifying as neither wholly male, nor wholly female. 34%

Gender identity is a spectrum, and not just one spectrum.  

Does a person identify as one gender, but have a body that is the other gender?  Where on that spectrum are they?

Do they dress in ways totally aligned with one gender, or with other, or a mix of both?

Do they have a physical body which is completely male, completely female, or one that falls elsewhere on that spectrum?

There are many ways to identify gender. And many ways to address someone who is not male/female.  It's polite to ask how someone wishes to be addressed.  

When we talk about identifying the women who are missing from autistic diagnosis, we also need to question whether that is all we are missing.

Are we missing the non-binary individuals also?  How many others are we missing?

We are barely at the beginning of understanding autism.  Very proud to be part of this community.

Thank you for listening.

Until I can try no more

Attending a big gathering. From personal experience, as an autistic child unable to use language to communicate.
In the morning, I woke. Dreading what was ahead. Would I be able to cope? I didn't know. There were too many variables. Too many unknown social things. Too many unknown sensory things.
I get out of bed...into a bathroom. The ice cold of door handles, surfaces. The shocking heat and noise of water. The stench of perfumes and fragrances. The rough pull of towels on skin. The intense pain of brush through hair. The retching overpowerment of toothpaste on scratchy brush.
I get dressed, pulling on each sensory nightmare, struggling to do up buttons and sort out directions of which arm and leg goes where.  I try to keep my clothes the same, but this is a big event. Big events mean different clothes, different painful shoes sometimes.
I eat breakfast, each mouthful a different combination of texture, flavour, smell, hot, cold, pressure...My vision and hearing works so differently from that of others.  The detail fascinating...or overwhelming.

I'm already part of the way through the amount of energy I have for the day, and it has hardly begun.
I cannot see faces, but I know the shape and sound and movement of my trusted carer.  They use words to tell me what to do, but my brain struggles.  What does the word mean....it's thinking, thinking....visualising it, trying to imagine what that word translates to, in pictures.  Mine is visual autism.   Others have different kinds.  My brain records the 'sound track', and replays it.  Sometimes I'll repeat a word over and over, trying to build new brain wiring to match my brain's pictures ....to that sound.  I'm told off for repeating the word over and over.  I don't know how else to make my brain do the wiring for it.  It's confusing to be told off for learning in my own best way.  I use my body to sense what is around me....using touch, using movement.  Flapping my hands means I can feel where the rest of my body is, can detect how far apart I am from something.  I'm told not to flap.  It's wrong, I'm told.  So now, I don't know where I am.  This is better, I'm told.  Why is it better?

Now, I am put in a car. The noise, the movement, the unknown. When will I be there? What lies ahead?  I have to hope that I have enough information.  What have I been told or shown?  A plan, a map, a photo or two?

I get there, and there is chaos. The door opens, and the noise is overwhelming. It smells different, it looks different...and I realise that I am stepping out into an environment so alien that it might as well be the surface of the moon. I cannot see faces well, so there is a sea of strangers in front of me.  My carer becomes part of that sea of movement, that extraordinary chaos.  All I know is that the car is at least a safe place to be. At least somewhere I know the feel of, the smell of. The sound of.  A place of relative quiet, where I can have my own sounds, my own possessions.  Where am I going?  What is ahead?  It's absolutely terrifying.

A person tries to get me to leave the car. Persuasion, urging, bribery, nothing works. It's social pressure to add to the sensory heck. Now, I have to please someone, even though I am desperately afraid of my brain hitting 'overheat' and me collapsing down, down into shutdown. The place we fear. Well, for some it is meltdown. But the effect, so similar. A brain event, where the brain can no longer process anything... and goes into absolute emergency 'stop' or random whirling. The sort of fight/flight/fright/freeze stuff of nightmare. The nightmares you would dread. Those. Or a total blank, in shutdown.  Just pain and fear, unable to move or speak.  Ahead, if there is meltdown for a child, often pain from rough handling, loud voices, accusations....and the recovery, through exhaustion.
How much of this is ahead?  Minutes?  Hours?  Days?  I don't know.

The pain and fear builds.

I want to love the person who is doing this to me. They are all I know. They are my world. This must be important. This must be vital, for them to do this. It must be more important than I am, than my life is.  There must be a reason why the choices made for me hurt so much.  There must be.  

I want to please them....so I will try....and try.....and try....

Until I can try no more.

Today, I hold in my heart all the non-verbal autistic children who wish their carers did not put them through this stuff.  No matter how accidentally.
Vital stuff is of course important.  We all have to do something to keep ourselves clean and well, etc.  But...so much happens that could be done in kinder ways.

"It's their autism - it makes them have meltdowns but we love them anyway".  I challenge this.  The overwhelm is what makes nearly all the meltdowns or shutdowns.  Overwhelm that other brains 'tune out'.  Sensory stuff that other brains do not detect.  Social overload that other brains cope effortlessly with.  There are alternatives to nearly all of that. Alternatives less likely to overwhelm.  Yes, we can't detect everything - but we can try.

Parents, carers, you need to tune in to the needs of your autistic children.
Start by detecting every single encounter with noise, texture, heat, cold, pressure and visual stressor that your young person has.  From the moment they get out of their scratchy, noisy bed (trust me, they are...) to the moment they climb back into it.  And all the social encounters too.  Make a list.  Every single thing.  If you have access to an autistic specialist, get them to help spot things you wouldn't imagine were a problem.  So many autistic children can hear and see at different frequencies to most other people.  A lot of adults, too.

Then, see how many of those sensory and social encounters are vital.  See how many can be altered, adapted, changed.  Autistic brains take in so much detail.  That detail literally overheats the brain.  It's not an attitude problem.  The brain needs enough balance between overwhelming stuff, and rest.

Look round your house for fluorescent lighting.  It's often in bathrooms.  It's often in those wretched 'energy saver' bulbs.  Those can flicker like a strobe light for many autistic people. Try swapping them for halogen or good quality LED ones.  Try noise cancelling headphones if your young person will wear them.  Try different coloured dark sunglasses if your young person will wear those.
Let them choose do-able clothes, wherever possible.

Use fewer fragrances, fewer rough textures.  Fewer sounds in the background to handle. Clear, careful instructions.  Visual clues, if needed.  More rest time, somewhere really low-sensory.  A hobby acts as a 'rest time' for most of us.  If the brain can focus on the passionate interest, it allows the other circuits to cool.

Make sure the young person knows what is ahead and for how long.  If possible.

Trust them when they resist....often they are saying, "I do not know whether my brain temperature can cope with what's ahead...".  No, really.  On the left, an autistic brain in a social chatting situation.  On the right, a non-autistic brain.  Brain scans.  That's the areas of the brain that are having to work.  Work equals heat.  Which one is going to get more exhausted, more hot?  It's a real challenge for us, not an attitude problem.

It's not 'their autism' that causes us intense pain, most of the time.  It's the unwitting stuff that parents, carers and teachers do.

Learn about autism, from autistic adults, from autistic children, from autistic parents, from autistic teachers and professionals. And yes, from non-autistic ones who are willing to listen, and learn, and work collaboratively with us.

An autistic child in meltdown is not 'being autistic', they are being in pain.  Yes, parents and carers, you love your child.  Love them enough to work together with them, watching and listening to detect what hurts, what is too scary.  If you take enough sensory and social overload off, they can work on communication skills with you, they can work on life skills.  A child in pain can only respond to the pain.

Let's work together for a world where the pain stops.

Autistic Communication

The picture shows three autistic people with grey hair, sitting on a park bench.  There is a man reading a newspaper.  There are two women, one holding a small dog.  The two women are turned slightly towards one another, but not completely.

Notice anything about the picture?  No faces.  I don't see faces.  Like many autistic people, I'm faceblind.  The part of my brain that decodes which face is which doesn't work.  So, how would you recognise who was who, next time you met them?   You have the other clues,  of course.  Height, weight, shape, clothing style, perhaps the dog.  Beards?  Spectacles?  Hair style?  Everything becomes an important clue.  I can walk straight past my own son in the street; I don't recognise his face.

Recognising who we are speaking to is a first step in good communication, isn't it.  Signalling to them that they are a trusted person.  Spotting people who have been unpleasant.  Knowing who is who is important.

So, many autistic people start with this challenge.

Then, there is the challenge of all that non-verbal communication that happens between non-autistic people.  Eyebrow raisings, eye signalling, body angle and space, body leaning forward or backward, hand gestures, arm gestures, face expressions, voice tone, legs crossed, feet pointing in a certain direction.  Almost the whole of a non-autistic person's body is a signalling system made for non-autistic people.   It's interesting to watch, for someone like me.  But it's also baffling.  

I communicate differently to that.  So do all other autistic people.  Social communication differences are a standard feature of autism.

In the picture, the two women are turned slightly towards one another.  Perhaps they are talking. Perhaps not.  Remember that I said this is a picture of three autistic people.  I would not assume anything about communication from looking at this picture.  It is very likely that the man and the women next to him are in fact communicating.  In autism, it is respectful not to look one another in the eye.   I'd also expect that the two women are a lesbian couple, since some 30% of autistic people are from the LGBTI community.  Different set of expectations, eh?  Were you also expecting the picture of autistic people to show younger people?  Why?  Challenging stereotypes, right here....right now.

It is respectful not to face an autistic person directly, but to sit alongside them where possible.   It is respectful not to overwhelm them with social signalling, face expressions, etc.  Autistic people may rock or flap or tap things, to find out where they are....or as a way of finding where their bodies are ('proprioception'), as a way of calculating how far they are from other things and people. We may also use those kinds of movements ('stims', to use our phrase) to regain a sense of calm in a busy, noisy place.  So, insisting on 'correct use of body language and eye contact' from us actually gets in the way of autistic need.  As eye contact can cause exhaustion and brain overheating, it is also a cruelty for many.  

Only this week I heard of a college for autistic people who were telling autistic students to give a presentation.... and then giving them a low score if they failed to make eye contact during it. My goodness me, that is unacceptable. It's like refusing to give presentation marks to a wheelchair user, unless they stand up for the presentation.  Or like telling a Sign-Language-using Deaf person that they are going to have marks deducted for using sign language.  Autistic need is autistic need.  I hope you're listening, trainers?

So, we already have a huge range of communication differences.  We haven't mentioned language yet.  I use language differently to other people.  Most autistic people do. I think in pictures, not words.  Some autistic people do.   I am sometimes non-verbal, even as an adult.  I was effectively non-verbal for ten years as a child.  i could repeat words, but didn't know what they were for.  The National Autistic Society have produced a useful short film, "Make it Stop".   It is about how long it takes to think of the answer to something, when your brain doesn't 'do' words.  http://www.autism.org.uk/get-involved/tmi/film.aspx  is the link.  Needs sound.  If people ask one question after another, it becomes overwhelming...thinking about each needed response.  Like a traffic jam in the brain.  We don't actually hallucinate about seeing people, by the way - it's just the way the film is trying to make a point.

In the first 20 years of life, learned spoken words by repeating them, and phrases, over and over and over.  "Echolalia".  I was teaching my brain how to use different circuits to do language, I think.  If I hear a new word or phrase now, I do the same thing.  I have to repeat it and repeat it.  People hear me at national and international conferences, now, and would never guess that I can struggle with words.  At my age, all the repetition really worked.  I learned thousands and thousands of words and phrases over time.  Putting them together in different ways.  But language is also about which words to use, when, to who, isn't it?   That's the 'social' bit of 'social communication'.  And it goes wrong.   

It goes wrong, because I can't always see who I'm speaking to. 

It goes wrong, because my brain doesn't really 'do' social rank, so I may treat a passing Bishop, Lord or Baroness like an old friend.  (Some are, as it happens, but that's another story...).   

It goes wrong, because I can take a time to think of the right response....by which time, the right moment to say it has gone.   

It goes wrong, because some words are about social-concepts, and I can't think what they might mean.   

It goes wrong, because if words are used angrily towards me, my brain just seizes up or shuts down.  I'm hopeless in a verbal 'fight'.  So I have to be hugely careful.  

I always work with others that I trust.  Always.  

If I go non-verbal, I use technology.  It happened to me at a conference recently where the speaker was relentlessly negative about autism.  I had to write on my iPad.  That's fine. That's communication.  This blog is communication. 

With trusted people, I also use touch to communicate.  I have trusted friends who know to put a hand on an arm or shoulder to say, "I'm here, it's OK".  Obviously all use of touch has to be safe and sensible.

So...here I am.  Autistic, sometimes non-verbal, and running a national Professional Practice.  Speaking at conferences, training people on autism, being a mum to a fabulous autistic son who is a well respected national speaker also (Chris Memmott).  Which is all great.  You'd think therefore that I have my life sorted, yes?  Mmm, no, because every day I am with people who expect me to communicate differently.  To cope with sensory environments that are painful.  Who cannot see what I can see, nor hear what I can hear...so may think I've 'lost the plot' if I'm standing transfixed at the most beautiful colours and patterns.  Colours and patterns completely invisible to their eyes, it seems.  A shame.  Lots of deficits to being non-autistic...

When we are at home with one another, as a family, we spend much of our time in different rooms, doing different things.  We may eat separately. We may not speak much for a whole day.  To others, it could look totally 'dysfunctional'.  It's not.  It's a perfect set of adaptations for a set of autistic people, and it works beautifully.  It allows us the brain 'cooldown' time that we need, after a busy day.

Behaviour is also communication.  I get a lot of parents and carers who say, "My child cannot communicate - they are always angry/always race about/always [whatever else]". That's communication, right there.  A child always hitting their head could be suffering sensory pain, or migraines.  A child hitting their mouth may have dental pain.  A child hitting their body may have pain in that part of their body.  A child running away in fear is communicating fear.  It's all communication.  I think some parents and carers mean, "I don't know what it means".  Ask an autistic specialist.  We can often see, hear and sense things that other autistic people can also see, hear and sense.    We can often solve problems faster, as a result.   I get a certain amount of, "Oh but we can't just ask one autistic specialist, because they're just one autistic person".  Yet, they ask just one non-autistic specialist without any worries about doing so.  Odd, isn't it.  

So, that's a starter on communication.

It's different.  Different is OK.  Learn about our differences, and find ways to respect them. We're learning about yours.  Learning together is good.

Thank you for listening.