Autism Research? Participation from Autistic People. Some Tips

Recently, I have been honoured to be a part of some teams advising on autism research.  Academics from all over the world are aware of the need to produce research that is not only academically excellent, but leads to better lives for autistic people.

Many are realising that the researchers themselves may be autistic, and either happy to disclose this, or working in places where such disclosure could be problematic for their career.  Unfortunate if so, since many autistic researchers have great strengths that they bring to this work.  Some working at the highest levels in academia.  Make your University a safe and positive place to disclose autism. 

Early career researchers are often asked to set up autism participatory research projects, but aren't sure how.  Ask a good group of autistic people to help design the research, as well as participate in it in ethical ways.  Ask around for recommendations.  There have been very good materials produced by groups around this subject of participatory research.  I would advise people to look at the work of https://participatoryautismresearch.wordpress.com/ and the materials at http://www.shapingautismresearch.co.uk/post/163944360130/its-here-a-starter-pack-for-participatory-autism

I have seen a lot of research being done, and have been asked to be part of various projects over the years.  Some have gone really well.  Others, mmm....

Let's look at a basic checklist of my own.  Note that it is a general commentary.  Each autistic person will have their own views on things and should be asked.

Is your idea ethical?  In autistic communities, it is generally considered extremely rude to assume that we all want to be cured.   It is also considered very rude to assume that we are broken versions of other people. Some have found excellent ways to thrive.  Others need much more support than others to function in the society we have, it's true.  But we are all  still very much to be respected as fellow autistic people, and as fully human beings who use valid authentic ways to communicate and live our lives.   Make sure you read/view plenty of different blogs and papers by different autistic communicators, whether they communicate in text, video or otherwise.  Look for the hashtag #actuallyautistic on Twitter, for example. Visit Autistic Allies on Facebook.   Our communication style is different to that of non-autistic people, e.g. we use eye contact differently, and may move our bodies differently.  If you start from an assumption that you are looking at a different culture, and that both sides need to learn about one another, you'll be at a fairly good starting point.

How are you going to find a good group?  Suitably diverse.  And, in autistic terms, that means finding people who communicate differently, e.g. those who use assistive technology or need support in meetings or to use online methods.

Who is going to be in that group?  Remember that some autistic people may be very naive about motive and people who lie, and this makes groups of autistic people good places for predators to appear.   I've seen more than one research group find themselves in huge trouble by assuming that the participants are all genuine autistic individuals.  Very occasionally, someone will maliciously pretend to be a valid participant, in order to get access to that group. I mean people who are not autistic, do not believe they are autistic - and are entering the group simply to access people who may be vulnerable.  Just be aware. (Self-identification as autistic is valid in many research settings, of course, and that is not what I mean by a non-valid malicious participant).

How will the group communicate?  This is a modern world.  Autistic people are generally not that keen on travelling long distances...to sit in a room filled with sensory hell....with complete strangers....who communicate too fast and in ways they can't answer.  It happens to me, often.

Here's a room I'm expected to visit to answer questions. On the left, how you may see it.  On the right, with my different sensory processing, how I see it.  Blindingly bright.  Flickering overhead lighting.  Deafening noise.  Overwhelming smells.  By the time someone's asking me questions, I'll agree to anything to get out there. Or, be non-verbal.   Result - useless research.


So, ask each person what works best for them.  Then think about how to make that happen.  Simple changes to location or environment?  Writing?  Text?  Social media group?  A walk in the park together?  A telephone call?  A Skype conversation?  Which of those would work for them?

Think about honouring those participants, too.  If you can't afford to pay them, it is important to find another way to honour their time and effort.  It's amazing how many times we're asked to contribute for free, then not given the opportunity to be named as a participant (if we wish to be) or paid/rewarded in any way.  Oh, and also not fed or given so much as a cup of tea.  It's fabulous when people put some thought into it, and find ways to say thank you.  A proper thank you card can be appreciated. A lot of autistic people may not have £50 to travel to your event, so paying them expenses a month later still means they can't get there.

Remember that some autistic participants may not know how to do group work.  Others may not able to collaborate well, or may become anxious about different viewpoints.  Make sure you create really clear rules, especially against any possible bullying behaviour. (No more likely than from anyone else - but any group of humans can be a place where some behave in difficult ways).   And really clear guidelines on allowing one another equal time to contribute.   You may otherwise find that someone 'takes over' and the others do not get a say.  This may not be in any way deliberate; the person may simply not realise that they were supposed to stop talking/writing emails. Be clear.   In autistic culture, it is often polite to put in a huge amount of information and explanation, so it can be a cultural misunderstanding.  It is also polite to say exactly what you mean.  Find ways to allow people to add a lot, without causing difficulties for others in adding their own thoughts. Maybe a way to write files of info and store them in a group, for example.   Allow people to bring a trusted colleague, friend or advocate with them if it helps.  Or to use such a person to help with communication in other ways.  Remember that some autistic people find telephones especially difficult to use also, so ringing them up for a chat may not be a great idea.

In groups in person, good chairing is important.  I use a signalling system to say 'I would like to contribute something', and the Chair will then ask me.  It saves having to guess when it's my turn to speak. Or speaking over the top of someone else.  Or not speaking at all, and people thinking I had nothing to say.  A good Chair will make sure that everyone has a chance...and that means giving us time to answer.  It's easy to say, "Anyone got anything else they want to add? No, OK, off we go".  Blimey, that's too quick.  I need to think.  Best to leave space for thinking and answering.  Not just a couple of seconds.  Take your time.  Some people really cannot contribute straight away.    I'm often nonverbal in group settings, but can still type.  So maybe allow people to use communication technology in the meeting, e.g. a dedicated Facebook group or email link that you can keep open during an event.

Make time to get to know people, too.  It takes a lot of trust to tell people the truth about our lives.  It's too easy for some of us to not disclose, to be too worried about outcomes.  Be sure that you are trustable, and build up that confidence in people.  Respect privacy and work within good personal and professional boundaries at all times, of course.  Hopefully your team will already guide you through the required ethics, of course.

Don't 'reinvent the wheel'.  A lot of autistic researchers have already done pioneering work that you need to read, and you need to add to your project.  Find them.  They're fabulous.  Collaborate with them.

There are a huge number of other top tips to be found from others,  of course.
But these may help some of you do some useful thinking.

Especially around what we're trying to do with that research.  Is it leading to better employment?  Better healthcare?  Better education?  Better support and advocacy for individuals and any families/carers?  Is it helping us to understand how to improve quality of life?  Improve access to the arts and all that makes life worth living for people (autistic or not)?  Developing skills and enabling people to be what they want to be?  Does it lead to better empowerment, better ability to be able to say 'no, actually I don't feel safe or comfortable doing this'.  Some 'therapies' teach that autistic people must comply with all instructions, for example.  Many in the autistic communities have serious concerns about these, ethically and in terms of mental and physical safety.

Autistic people need to be empowered.

We need you, as those early career researchers, to work with us.  I'm starting my own path to a Masters degree this year, and looking forward to many more hours with fantastic autistic and non-autistic colleagues.  Much to share, and much to learn about.

Good luck.


PS - the picture at the top shows clip art of all sorts of diverse people, with lines connecting each person to some of the others.  It is an example of collaborative working. 

Autism: Why won't my child clean their teeth?

"Why won't my autistic child brush their teeth?"  It's a question a lot of parents ask.  Some autistic individuals are of course very happy to brush their teeth.  Others, less so...

So, what's stopping them?  It could be one of a large range of things.

Autistic brains take in too much sensory information.  From scans, it appears that this causes literal overheating, as too many of the brain's electric circuits are used at once.  Then, we need downtime to let the brain temperature cool off.  If we don't let it cool, we could go into a painful/scary shutdown (7 out of 10 of us) or meltdown (3 out of 10 of us). Both are brain events, not a way to get out of doing stuff.

Firstly, what's going on around them at the time?  Are they expected to also shower/bath, change clothes, etc?  All of those are big sensory 'asks' for many children.  Are they expected to be in an area of a lot of noisy chatting from siblings and family at the same time?  Have they recently come in from a big noisy, sensory-challenging event, e.g. after-school clubs, supermarket visit?  They may need downtime between those kinds of things, and teeth-cleaning.
Let's now look at what teeth-cleaning involves for a good number of us:


Firstly, we need to understand the task.  Not many of us have a very good sense of where our bodies are.  Being able to feel their own teeth, and see them in a mirror, is a good first skill.

Then, noticing if teeth need cleaning.   It may help to watch another person clean their teeth, or it may not.  Some learn by watching, others mostly by learning to do the task themselves.
A social story can help, with pictures showing the steps.  Various ones of these can be found online.

Then, having skills to hold the toothbrush and clean something without dropping it.  It can be useful to practise cleaning other things with a small brush first, for example. Not the actual toothbrush - you probably don't want to teach them to clean the house with their own toothbrush...(yikes).   Try to get a brush that has an easy handle to grip, without ridges and bumps all over it.  It's possible to get 'easy grip' toothbrushes.  Look for a brush that has bristles all the same length, to start with, and very very soft, with a small brush head.

Make the room as quiet as possible.  Get rid of endless unnecessary smells in there, too.  The more relaxing it is, the more chance of success.

Let them choose a toothpaste they like.  There are all sorts of different flavours and smells.  It can take a lot of courage to sniff and taste even tiny bits of something new.  Especially if it's ones with different colours and different textures as part of it.  A tiny bit of toothpaste, or just water, might be a good first step.

Once they are used to the feel of the brush in their hand, they can practise putting it in their mouth and cleaning a few teeth.  This is very noisy, and (for us) often very painful on gums, cheeks and tongue, as well as hugely sensory-overloading ,with the toothpaste smell and taste.  They need to be sure that they can handle it. 

 Let them have a think about it and a relax at that point.  Quiet praise.  When they are confident, they can have another go.  Teach them about not swallowing all the toothpaste, and how much to use.

This way, they are keeping their brain at a good operating temperature.  It's not having to face a barrage of noise. It's not having to face overwhelming pain from texture and pressure.  It's not having to cope with undoable levels of smell.   Teeth cleaning is still a scary thing for me as an adult, even though it's something I have to do twice a day.  I can truly understand why an autistic child may think that we're torturing them.

It may take them a while to feel confident in balancing that brain temperature. 

Once they are confident, they can perhaps learn to time it by counting, or with a countdown-timer.  Then, they know how much time they have to do this for...and can work out how much downtime they need before and afterwards to keep that brain temperature correct.

If you are worried about tooth cleaning in the meantime, your dentists can help.  Find one that understanding autism, and can advise you on using alternatives.

Some people are now using assistance dogs to help children learn about teeth cleaning and other daily skills, and to help keep children calm and focused.  It is worth contacting good respected charities such as Dogs for Good, to talk to them about pet dogs (PAWS scheme) or assistance dogs, and see what might help your family.




The photo is of three toothbrushes in different colours.

 

"Complete human beings, made in the image of God" The decision of the Church of England

In February, the Church of England's 'Government' met.  It's called General Synod, and meets in London/York twice a year.

One of the talks was about people with Down's Syndome.  We were told, 

"People with Down's Syndrome are complete human beings, made in the image of God, deserving full inclusion in both Church and society.  It is imperative that every step is taken to ensure that they are welcomed, celebrated and treated with dignity and respect."

People were asked to vote on this statement:  "...affirm the dignity and full humanity of people born with Down's Syndrome...a real welcome for all."  They all agreed.

The debate was indeed about Down's Syndrome.

But, I sense that we cannot help but apply it also to every other disabled and neurodiverse person.  Including autistic people. All two million of us in the country.

Welcomed
Celebrated
Treated with dignity
Treated with respect

What is it like to be celebrated?  

It's about understanding what is important for that person.
It's about honouring.
It's about seeing that-of-God within them.
It's about moving away from notions of speed, power, IQ, qualifications, medals, awards, qualifications, perfect health.
It's about enabling and including as equals before God.
It's about love.
It's about friendship.
It's about allowing the person to be a disciple, to lead, to encourage, to teach.
It's about learning from that person, with respect.  
It's about meeting them 'half way' - communicating together, not insisting on them matching your own communication.

It's about getting over egos and fears.
It's about meeting people and sharing life with them.
It's about considering what 'safe' looks like to someone who isn't you.

It's about including them in discussions about them.
It's about including them in writings about them.
By 'including', I mean leading.  I mean attending.  I mean being the ones with the expertise on our lives.
It's about a lack of pity, a lack of praying-for-their 'cure' -whether-they-want-that-or-not.

It's about realising that you don't have the whole picture, or all the answers.
And it's about realising that disabled and neurodiverse people have as many answers as you do.  But...people need to be humble enough to learn them.

The moment people have decided we are not worth it...
Too much bother...
Too much cost...
Too much effort...

That's the moment they decided we're not welcomed.  That we are not celebrated.  That we are not to be treated with dignity.  That we are not to be treated with respect.

And that we are not disciples alongside them, all walking in the footsteps of our dear Lord Jesus.

So, do we affirm the Synod vote?  

Walk with us, friends.  In love.





The picture is floor tiles. Some are patterned and coloured, and, in the light from the window, formed a beautiful cross.

Applied Behaviour Analysis - Personal Reflections

 

 

 

As an autistic autism professional, my work has involved a very large number of different groups and settings.  I have had the honour of working with the Houses of Parliament, Teachers, Psychologists, Psychiatrists, Social Workers and therapists of all kinds.  In each setting, we work collaboratively, respecting one another as fellow professionals and trainers.  I and my team are asked to advise on a wide variety of scenarios and situations, whether it involves children, young people, young adults or adults of other ages.  We assess care home settings, train fellow professionals on the modern understanding of autism, and act as consultants.  It's fantastic work, and brings me into contact with many hundreds of autistic people.  Researchers, fellow professionals, parents, employers and employees, and a huge range of others working from home or not currently working.

 

I have done this for 20 years now, part time, including being a Trustee of an autism charity, a Governor in an autism-specific school and Vice Chair of Governors with responsibility for SEND in a large and very mixed Primary School setting for many years, where our young autistic people thrived.   I am also Managing Director of a Professional Practice covering most of the country and handling vast amounts of money and responsibility, as well as employing a team.

 

There has been only one group of people who have generally refused to engage with me.  Specialists in Applied Behaviour Analysis ("ABA").  I will say from the outset that there have been two exceptions to this, over the last years.  Two individuals who were respectful, thoughtful and valued my input.

 

I shall not name names or organisations in what follows, because those are not important.  What is important is the pattern of it, for me as a professional.  These are just some examples.

 

Situation 1:  Working in an ABA specialist charity for two years.  We were expected to cope with the sensory environment.  My fellow autistic professionals were sometimes rendered so ill by it that they had to go home.  The leader of the charity would not speak to me.  They stated that in their view, there was no need to consult with autistic people, as it took too long.  We would be taken to events where the sensory environment was terrible, the format was unknown, and an autistic person would be paraded at the front as a 'zoo exhibit', told to say nice things about the charity.  Then we would all applaud them.  No-one would speak to the other autistic people - we were irrelevant.  I took another fellow professional along.  Also autistic.  They were utterly ignored.

 

Situation 2. Working in a formal advisory group for six years, at a high level.  I was Vice Chair of that, brought in to provide specialist autism advice.  In it, representatives from an ABA charity.  I can safely say that in those six years, they did not speak to me even once, let alone ask my advice on anything.  This is quite an achievement.

 

Situation 3.  A powerful ABA-supporting parent, in charge of allowing access to buildings for me.  They made sure I was disadvantaged, time after time.  My access was taken away and I was made to go through the most extraordinary procedures that I simply could not access.  Meantime, the meetings in that building were filled with ABA supporters, and the senior figures would be sent endless letters from ABA supporter parents, telling them that ABA was the only way for autistic children.  That it should be in every school.  Every setting.  That the children would be unable to function with it.  I know this to be untrue.  It is simply nonsense.  Some children may benefit from some aspects of ABA, but ABA for autism is something that many professionals are deeply concerned about. There are many ways to teach a child good skills.

 

Situation 4.  ABA charities online.  I would attempt to engage with them, politely and respectfully, asking questions about their work.  I would be blocked on their social media.  Repeatedly.  None of their parents and teams were allowed to hear from me.   They also blocked other fellow autistic enquirers, asking equally polite questions.

 

Situation 5.  An anecdote from a fellow autistic professional, who had two ABA trainers in their training session.   The ABA trainers undermined the training session repeatedly, and were entirely dismissive of the autistic professional. 

 

Situation 6.  The training materials.  I got the industry-standard ABA training materials.  Endless pages of how to control autistic people.  One brief mention of sensory needs, in passing.  A rather alarming example?  Paraphrased - " We asked the parents what they wanted their child to be like.  They said they wanted their child to go to parties like the other children. We explained that yes, we can deliver that for them, no problem at all."  I've watched training happening in real life.  I've watched videos of it.  I've watched YouTube about it.  I have spent two years trying to understand why ABA is seen as a good thing.  Nope.

 

Situation 7.  I went into a care home, to do an assessment, as an autism professional.  An ABA trainer was there.  They undermined me, spoke over me, and barged into the discussion on every solution and every suggestion, to say their way was the only way.  They even had business cards to hand to people to say they were the only person to be contacted.  My fellow professional confided in me that they had tried ABA with some of their people, and it had been a disaster.

 

Situation 8.  A fellow professional confided in me that they were hired by an ABA charity to lie to the parents.  If they were worried that their child was responding badly, and wanted to remove them, they were told to tell the parents it would damage the child.  Even though that was a lie.  I have no direct proof of this, but the person had no reason to lie to me.  They also note that the charity hired zero autistic trainers or managers.  Everything was done by non-autistic people.  Offers to assist with those functions, from autistic people, were turned down.  Autistic people were allowed to be volunteers, nothing more.

 

Situation 9.  I and fellow autistic people have been asking online whether there are some happy ex-ABA-adults who can tell us what's good about it.  Silence.  Nothing.  Well, apart from the ones who are under an Ambassador contract with the charities.

 

Situation 10.  I went to a consultation event.  There, an autistic adult who had been put through ABA.  We chatted.  All through the chat, he was making direct eye contact with me, with no clue what it meant, and attempting to smile throughout...which was a problem, because he was actually really sad and was crying.  His life had fallen apart once he got to university, he said.  ABA hadn't given him the skills he needed for real life.  He knew to stare and smile, and wear a business suit, and say Polite Professional Things - but his quality of life, as an person, was now so bad that he couldn't cope.  He couldn't be 'non-autistic' any more.

 

I'd like to put in some positive examples now, but I've not been able to find any from autistic specialists or adults.

 

Now, this is all quite strange, isn't it.  After all, if this is an ordinary, everyday good therapy for children, then of course one would talk to one's fellow professionals about it.  Of course you would engage with them, and collaborate on how to bring good things to the lives of children, together.  One would hire in autistic professionals to showcase what we can do, what we can bring.  One would use autistic experts, autistic managers, autistic leaders, autistic trainers.... 

 

ABA practitioners don't want autistic professionals within a mile of them, it seems.

 

People ask me whether I like ABA.  I do not.  I have attempted to give it 'the benefit of the doubt', but frankly, as an industry, it is the exact opposite of being respectful of autistic individuals. 

 

It worries me tremendously that an industry that alleges to want to teach autistic children to speak then seems to spend its time silencing ,or refusing to hear, the autistic adults.

 

The two exceptions have been a blessing.  They are nice people, genuinely trying to offer something to autism.  I am sure there are more nice people out there.  It's not about individuals.  It's about whether this is a respectful, responsible approach, given that there are so many other methods available that seem to be more respectful.   I have too many questions that need answering about the methods used.

 

We are starting to see research happening, showing that ABA may be causing harm to some.  A recent paper by Henny around possible links to PTSD, for example.  It is an emerging set of concerns, and clearly more work needs to happen around this.  I, and many others, look forward to clarification on the short, medium and long term outcomes. 

 

Children need to be safe and have a good future, allowing them to flourish.  In terms of their own agency, their confidence, their sense of being able to solve problems and learn skills collaboratively.  In terms of their moral and spiritual awareness.  In terms of their intellectual curiosity and opportunity. In terms of being able to say 'no' to things that cause pain and fear, unless there are really good medical reasons for those.   In terms of seeing really good adult role models and having that opportunity to challenge, to think for themselves.  

 

Are they enabling all of this, with ABA?  A serious, open question.

 

 

 

The picture shows a young boy with dark hair, wearing a blue and white striped top and blue trousers.  He is staring and smiling, but it looks false. 

 

 

 

 

 

 

 

Autism, Shutdowns and Spoon Theory

The picture shows 12 spoons.

Christine Miserandino was the first person to write about 'Spoon Theory', in 2003.  Her original article can be found at:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Since then, a large number of people from the disability and neurodiversity groups have used this as a basis for explaining our own situations.

I am sometimes asked about how 'spoon theory' relates to autism and shutdowns.  I shall explain it from my own perspective, in this blog.

Firstly, a reminder of the principles of 'spoon theory'.  Let us say that an average person wakes up in the morning with (say) 12 units of energy to 'spend' on the daily activities.  Once all that energy is used up, they can do no more and must rest. 

Christine illustrated it by imagining the units of energy as something physical - and the first thing she found was 12 spoons in a cutlery drawer.  So those became the example. 

Each spoon represented a 'unit' of energy for that person.  She then explained how much energy each daily task, each social event, took to complete for her, as someone with a long-term health condition.    Each missing unit of energy meant that she had one fewer 'spoon' for the day.  If she had overspent the amount of energy, maybe she could borrow a 'spoon' of energy from tomorrow....but then, tomorrow, she would have fewer units of energy to complete that day.  It is a helpful example of how much of a challenge life can be, for people placed in situations which require huge energy to complete. Autism is not a health condition, but if we are put into inappropriate social and sensory situations, we can run out of ability to keep our brain operating.  When that happens, we go into meltdown or shutdown.

What is it like for me?  I'll take tomorrow as an example.

Let us say that I wake up with those 12 units of energy, represented by 12 'spoons'.
I can do at most 12 things, before they're gone.
Some of the things need more than one unit of energy to complete.

Examples:

Showering, including drying and any lotions or deodorants etc. - 2 'spoons'.
Cleaning teeth - 1 spoon.
Washing and drying hair - 2 spoons.
Getting dressed - 1 spoon.
Dealing with the morning tasks for the house, family and animals. 1 spoon.
Driving a long distance. 2 spoons..
A day at work - 5 spoons. Visiting a shop to buy ingredients for dinner. 2 spoons if it's a small shop, maybe 3 or 4 if it is a sensory nightmare.
Preparing dinner for the family and sorting out evening tasks for the house, family and animals. 2 spoons.
Meeting a friend in the evening. Maybe 1 spoons, maybe 4 spoons.  Depends if they are autistic or not.  If not, I have to work extra hard to communicate. I want to. I love being with people, but I can't do it for long without running out of 'spoons'.
Getting ready for bed  1 spoon.

Total possible 'spoons' of energy?  Not enough.  I have 12.  12 and then I'm out of energy and unable to do more.  The sensory and social load would be too much.

So, each day, I have to plan how to use that energy.

That's how I have to plan my life, as an autistic person asked to live in a world that is not designed for me.  Too bright, too loud, too many social demands from people who expect social skills that match theirs...until they learn to 'speak autistic' and take the pressure off me.

If something unexpected happens, I may need to expend even more energy.
Angry person - for me, 5 spoons gone at once.
Unexpected change of venue from a doable one to one that is a sensory nightmare - 3 spoons gone, maybe more.

Then, I'm in trouble.
If I can't rest for long enough, to recover, after that kind of emergency 'spoon drop', I'm in shutdown. Many autistic people report that they experience shutdown sometimes or always, not the lively 'meltdowns' in common literature.  Here was one online poll.  Whilst informal, it matches with professional experience.

I cannot speak, or move much.  Overwhelming, pain, exhaustion.  And every 'spoon' I have is then gone, probably for tomorrow too.

This, my friends, is why autistic people plan so carefully, and are so concerned about knowing what is ahead. 

Important to know about 'spoon theory'.  Important to realise that small changes for you may be huge changes for your autistic friends and colleagues.  Important to realise that if we ask for information, we need it to be around those social and sensory energy-loss-points.  Help us know whether we can do the thing.  It makes such a difference.

So many autistic people have to live lives just about making it through each day.
So many are pushed into negative energy every day, for no good reason.

We want to be a full part of society, and  - if we are allowed to communicate, socialise and contribute in doable ways, we can do just that.  As friends, colleagues, specialists, carers and so many other things.  Work with us to achieve that, and all of society can benefit.

Thank you for listening.