Saturday, 2 December 2017

"Autism Costs Society £Billions" Or does it? Let's look.

Today, I read the NHS research project paper for Applied Behaviour Analysis (ABA).  "Intensive behavioural interventions based on applied behaviour analysis (ABA) for young children with Autism spectrum disorder: A systematic review and cost-effectiveness analysis"  is the title of the project.

The project (2017) is going to find out whether more widespread ABA will reduce the cost of autism for society, it says.  Summarised. It claims that this cost is £32 billion for the UK. £1.5 million per person, it says.  It links to the paper here by Knapp et al, 2009.  The actual figures in the paper are lower than this, curiously.  But, let's assume we start with the £32 billion.

In 2009, we had almost no idea how many people in the UK are autistic.
In 2017, we still don't know how many people in the UK are autistic.
Somehow, though, we 'just know' that all of them cost an average of £1.5 million to society.

Really?

In 2009, we had identified almost none of the autistic females.
In 2009, we had identified very few older adults who had missed diagnosis.
In 2009, we had identified almost no autistic People of Colour, mistaking autistic behaviours for cultural ones in many instances.
In 2009, we had identified almost none of the extravert autistic people, imagining that it was a condition involving extreme introversion and a fondness for libraries.
In 2009, we thought that around half of autistic people had a learning disability.  They don't. Few do.  http://bjp.rcpsych.org/content/bjprcpsych/early/2016/06/27/bjp.bp.115.174649.full.pdf refers.

In other words, in 2009, we had failed to discover nearly all the autistic people.  We imagined (incorrectly) that vast numbers of autistic people had a low IQ , could barely work and needed lifetime high support.  We had no idea who was working and who was not.  Not a clue between us.  

We still don't, because there's still no proper research.

I have pondered my 20 years in this field of work.  I work with autistic professionals across the UK.  I am blessed with autistic family members, and autistic friends.  I am delighted to work with autistic colleagues and be on social media with thousand upon thousand of autistic individuals.  Some verbal, some not.  Some with a learning disability as well.  Some not.  Most do not have a learning disability, by the way   - the statistic for that is way out of date also.

Of these, nearly all have tried their hardest to work.

Do you know what the barriers nearly always are?  It's the employers and the people who build and maintain the buildings.

It's not 'the autism'.

If I go to an interview, I'm expected to pass a social skills test. The interview. I cannot.  I would need the employer to hire me based on how good I am at the job.  They don't.  The social skills test is, however, how most people are hired.  Autistic people will fall over that proverbial hurdle nearly every time. "I am sorry to say that someone else had, er, more experience than you, honest guv", to summarise the rejection letters most get.

If I am then employed, I am almost certainly expected to socialise and work exactly like a non-autistic person, even if it destroys my creativity and ability to concentrate (i.e. the very things the job needs).  My appraisals will say that I am rude and unco-operative, even though I'm not.  I'm misinterpreted by non-autistic bosses, in other words.  I'm denied promotions and probably sacked for non-performance of some vague kind.  Or I am perhaps treated as a zoo exhibit and pulled out in front of audiences.  "Oh look, we've trained one to stack shelves.  Clap, everybody.  Isn't it encouraging!"  

If I manage to stay in the building, I'm expected to work under flickering fluorescent lighting (because it would cost 'too much' to replace one bulb with another, allegedly).  I'm expected to be deafened by noise, also.  Perhaps nauseated by intense smell.  Asking for any form of accommodation is seem as 'a cost', even if the end result is huge productivity and profit from me.

These are the usual barriers to economic success.  None of them are 'my autism'.

Yes, there are some autistic people who cannot work.
There are also some women who cannot work.
There are also some men who cannot work.
There are also some people with size nine feet who cannot work.

For those who cannot work, we absolutely do need good support, for them and for those that may care for them.  Proper funding.  Really good outcomes.  I and others strive for this in so much that we do, ensuring that each autistic individuals is able to lead a good life, with carers who are supported rather than exhausted.

But...an example.  Think about this.  Women earn, on average, less than men. Some women are in care homes, costing society huge sums.   Imagine that we responded to this by saying, "This is a tragedy for society.  We need to train the women to be male, so that this terrible cost for society is lessened".  Do you think that would help?

No, we need to put in place a working system that allows women to earn the same as men for the same work to the same standard.  We also need to base our arguments on something other than the equivalent of imagining that some vast number of women are in care homes, costing society a fortune.  Why this is acceptable for autism is not yet clear to me.

We do not run intensive behavioural therapies for women to turn them into men.  Do we?

We do not, I respectfully suggest, need to 'solve' this alleged financial crisis by running such intensive behavioural therapies for autistic people... to turn them into alleged-non-autistic ones, so that they can 'earn more'.  I'm mindful of the forthcoming research into such behavioural therapies and possible links to PTSD.

How did I solve the situation re money?  I set up my own business.  It's run for nearly 20 years now.  It pays a huge sum of money back into the economy in taxes, and benefits society in all sorts of other ways.  People like me are not in the data, because no-one has collected any.

My friends and colleagues, my family and contacts, nearly all make a contribution to society. Some work in very high paid jobs that they have somehow found a way to keep going.   Some have worked for decades in lower paid jobs, where they are allowed to -  doing fantastic work.  Some work tirelessly for charities and faith groups.  Some are carers for family, providing invaluable support for society by doing so.  Some are not able to work, but provide research, data, friendship, fellowship, humour, art, sculpture, music, poetry, books, articles. 

 A very small number are in care homes.  Many of these are care homes already using ABA or its related 'therapies' on them, and finding that the person is still in the care home afterwards.  Often, in fact, getting worse.  I work with care homes. I see it first hand.  I'm entirely unsure how ABA is helping them earn money.

We need to stop describing autistic people as a 'burden' to society.  Mindful of the recent Autistica research into the very high suicide rates for autistic people, and the emerging data around how constant negativity about us may cause this.

We need to stop thinking that 'autistic conversion therapy' is an answer, where 'gay conversion therapy' turned out to be a disaster.  I put it to my fellow professionals that ABA is going to turn out to be every bit as big as disaster as 'gay conversion therapy', and that we need to rethink our views of ABA rather fast.

If organisations wants to do this piece of research, I would start with...
A respectful use of language.  Nearly all autistic people want to be called autistic people, not 'person with ASD'.   
A proper balance on the expert panel, not just two unnamed autistic individuals amongst a roomful of non-autistic Professionals.  We have so many fantastic autistic professionals.  Use them.
A proper evaluation of whether this is even the right question to be asking.
A proper review of the underlying data on that project, starting with reality, not myths from 2009.
An engagement with employers, in a wider piece of work - making sure that they make it possible for autistic people to work whilst autistic.  Because making us pretend that we're not is not actually a strategy. It's a disaster, in my professional viewpoint.  For society and for the individuals.

Think differently.  Learn from us.  We're fantastic people and we are fed up with being described as burdens.

Thank you for listening.



The picture shows piles of money, and a red arrow pointing upwards.

Monday, 20 November 2017

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Thank you for listening.


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

Tuesday, 7 November 2017

"Autism-Friendly Event" What do we mean?



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

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

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

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

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


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

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

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

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

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


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

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

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

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

And...it enables everyone else to feel comfortable too.  People who are nervous.  People who are shy.  People who are exhausted.  People who are new to the venue.  People who don't have English as a first language.  Everyone knows what's ahead.

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

Most autism access is very easy.

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

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




Monday, 30 October 2017

Autistic Children and Misleading Reports on Violence

We have seen recent media reports claiming that half of autistic children are violent.

Let's explore where that statistic came from.

In 2011, a study was done.  This was heavily promoted by the big anti-autism group in the USA. That group promote anti-autism therapies, at huge cost.  These are paid for by insurance companies, who need to know that there is a terrible risk to not 'treating' the children. 

The researchers asked for non-autistic parents with just one autistic child to participate.  There must also be other non-autistic children in the family.  In other words, the autistic child had no-one in the family unit with whom they could communicate naturally.  A source of stress and misunderstanding for the child.

The family were asked about the violence from their child, now or 'ever'.  This included 'rough play', 'ever'.  Or pushing someone, ever.   They found that, by including bizarre criteria like this, they could pretend that half of the children were 'violent'.

Do you know what the statistic is for non-autistic children playing roughly or ever being 'violent'?  About half.

So, it's not actually any different.

We also know that autism in itself doesn't cause violence.  Links have been found to a combination of (for example) autism and some forms of ADHD.  Only the combination proved reliable, not autism.

Autistic people of any age are no more likely to be violent than anyone else.

I do wish we lived in a world that provided correct support for families whose child   - whether autistic or not - is violent.  I also wish we would stop 'demonising' autistic people.

Thank you for listening.

Tuesday, 24 October 2017

Inaccessible Healthcare for Autistic People


I love the National Health Service.  It has lots of fantastic people in it.  Dedication, expertise, caring aplenty.  It does a lot with limited time, limited staff and limited budgets.  It helped save my life, on more than one occasion.

We know that a lot of autistic people die horribly early.  Around 16 years too soon.  A big part of this is not being able to access healthcare.

Let's look at yesterday, for a member of my family, as an example of how autistic people can become so exhausted that they stop asking for help.

P has a sore eye.  He's autistic - and that is marked clearly on his healthcare records at the GP and the hospital.

The eye had fixed itself with a simple antibiotic. But it had flared up again after we stopped treatment after the five days. So, he went to his GP.  His own GP wasn't available.  Another GP saw him, briefly, and said, "Oh, eye problem? I don't know about eyes. Go to Eye Casualty at the hospital, straight away".  End of instructions.  No time to get our autism Hospital Passport paperwork.


We drove to the hospital.  We parked.  We walked and walked.  It's a mega-hospital.  A huge site.  We figured out how to get to Eye Casualty.  Under the fluorescent lighting, with the stench of hospital smells, the deafening noise, the blinding reflective surfaces.  Endless corridors, endless baffling signs.  The photo above shows how I process medical environments, compared to others.  Overwhelming.
We got to Eye Casualty and attempted to explain.  "We've just closed", they said. "You'll have to go to Accident & Emergency".

We attempted to find A&E.  A nice person helped us.  Out into the street, along the road, into the building.  To Pre-booking Reception.  We had to explain to them, at length.  They took notes.


They sent us to Actual Reception.   We had to explain to them, at length.  They took notes.

They sent to us the Triage Nurse.  We had to explain to them, at length. They took notes.

In between all of this, sitting in a busy, noisy area under fluorescent lights.

They sent us to the Nurse Practitioner.  We had to explain to them, at length.  They took notes.  "We don't know about eyes - we're not eye specialists", the Nurse said.  They did some basic checks to make sure it wasn't an injury. It wasn't.  We already knew that.  Ever such nice people at every point...but...

They told us to go to Eye Casualty Department, tomorrow.  But first, we have to phone to explain.


Today, we phoned, to explain.  No answer.  Left a message, explaining.  Again.  (No notes ever transfer between people or departments, it seems.  It's always a surprise to each new person).

Then, we phoned again, to explain.  They took notes.  They can't see us at all today as they are too busy, but they may see us tomorrow.  Or Thursday.  Or perhaps Friday.  An appointment is made.  Our usual GP now won't see us, because we're in the Eye Clinic System and that has to run its course.

We were shaking with exhaustion by the time we were home from hospital.

For autistic people, this is the equivalent of a 25 mile marathon, it really is.   And for absolutely no outcome.  No-one we saw, in all of that list, was able or qualified to offer any diagnosis or treatment.  (I believe that one prescription is required, but I am of course not a Doctor)


I am so thankful that I was able to advocate for my family member, and help them through this, but now both of us are pretty much wrecked for the day.  And tomorrow, it has to be done again.  As working people, it will have cost us three working days in total.  The changes of routine, the uncertainty, the pain of being examined.  It takes its toll.

The NHS is wonderful.  But we are deeply afraid of it, because it asks the impossible of us.  I'm sure it doesn't mean to.  I'm sure all of this is for good reasons, but no-one explains what those reasons might be.


Does it take days and nine stages to reach one person to look at one eye in a meaningful way?

How can we work together to improve all of this for autistic people?  




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 Festive Event. A tale of my past, as an autistic non-verbal child.

So many autistic children dread Christmas/other equivalent faith celebrations. 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 the celebration preparations. 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 faith 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 season 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.