Sunday, 25 February 2018

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 and the materials at

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 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.