Autism. Here we are, 100 years on from the work of Sukhareva, and 80 years on from the original misunderstandings in the 1940s. So, what's changed, in research? Almost everything.
I'm an autistic research consultant and lecturer/trainer,
currently semi-retired but just as passionate about improving the lives of
autistic people, and getting excellent training in place for healthcare,
education and many other settings. My decades of work in this field have led to
meeting countless hundreds of autistic people of all kinds, in all kinds of
settings – including a lot of work with those who are in mental health wards
and forensic settings, as well as those with current high support needs for
particular things. I provide up to date research summaries for Clinicians,
focusing on autism, learning disability and wider neurodivergence. I have autistic and disabled family members
with a variety of other neurodivergent situations in life, and they are deeply
loved.
First and most important, some basics that need saying:
All autistic people are individuals, and the information
below is not going to apply to everyone.
That’s true of all human beings.
All autistic people deserve a good quality of life and
really good support for the things they may find challenging. Support that asks them what they need, is
ethical, considers their Human Rights, and understands that the world has moved
on from the ‘deficit models’ and the bizarre beliefs underlying some
Behaviourist approaches. Their families
also need that really good support, training and consideration.
Some autistic people have a very tough time in life, because
of all sorts of factors. Many teams were
taught that all ‘behaviour’ was ‘autism’, and not e.g. exhaustion, trauma,
sensory pain, and other pain from various health conditions, visual impairment,
hearing impairment, unmet communication needs, undiagnosed forms of epilepsy
causing erratic behaviour, some support staff being bullies, etc. Very
unsurprisingly, this combination of things in autistic lives has led to really
bad life quality and a lot of anxiety and depression, etc. We can do so much better than this, as a
society.
We have learned so much in the last years, thanks to the
tireless work of autistic people generally, autistic specialists and our
allies.
Autistic people and allies are leading autism research
and ways forward
Take a look at https://monotropism.org/explanations/
Monotropism theory, explaining so much
about autistic focus and about why it’s so hard to switch attention instantly.
Also vital, https://journals.sagepub.com/doi/10.1177/13623613221129123
on Damian Milton’s Double Empathy
Theory, another groundbreaking autistic-led theory, challenging the idea that
communication differences and autistic ways of showing empathy are ‘deficits’
that are solely the fault of the autistic person in some way. A total rethink is needed.
Another top favourite is the work by McGreevy & team on
how we can enable excellent understanding with autistic people by truly
listening to their experiences, and how empathy, caring and collaboration are
the proper way forward for an exhausted and traumatised autistic
population. https://journals.sagepub.com/doi/10.1177/00221678241232442
I'm delighted to promote work like https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ which is a guide on how to talk about autistic people. It links to a huge amount of research, showing the basis of the excellent advice within it.
Also essential, in my view, the huge and ‘eye-opening’
survey findings from some 11,000 people, of which over 3000 are autistic? https://autisticnotweird.com/2018survey/
Enjoy. So much that dispels myths about
autism. Loads of categories of questions
here, and our answers. Including those
from nonspeaking autistic people, and autistic people with a learning
disability.
Want the updated version in 2022 with even more answers from
autistic people on all kinds of things? https://autisticnotweird.com/autismsurvey/
So, what's changed in the last decade, in the world of
autism? Arguably, everything.
The Joys of Autistic Children
Let's start with this lovely thing. https://link.springer.com/article/10.1007/s10803-021-04890-4
In it, the research team asked 153 families about their
autistic children and what they're like.
The results? Loving,
happy, having a zest for life, caring for others, sense of humour. So many other positives. .
More joy, from autistic interests and movements
Research on nearly 2000 young autistic individuals, showing
that their dedicated interests were a joy to them, rarely interfered with their
life, and may lead to useful careers and benefits for them and society. https://link.springer.com/article/10.1007/s10803-020-04743-6
Amongst the most popular focuses of attention,
art, music, animals, reading. So much
for the myths about us all being computer geeks of limited creativity, eh? Isn't research wonderful.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
Meantime, this new research shows that autistic stimming (repetitive behaviour
such as flapping or tapping) doesn't stop exploratory learning. We also know that it helps regulate and calm
individuals, and https://link.springer.com/article/10.1007/s11013-018-9590-y
is a lovely paper about the purpose and joy
of autistic stimming. Check those
'behaviour plans'. Unless a stimming
behaviour is causing damage to the person or those around them, why decide to change
it?
https://tandfonline.com/doi/full/10.1080/00131911.2019.1566213
is one of a variety of papers explaining
that many autistic children use those specialist subjects as a way to learn, to
thrive. They are essential tools for
many of us.
Less likely to be criminals, it seems from research. But
more likely to be victims of crime
Yes, autistic people were generally less likely to be
involved in criminal behaviour, it seems from this well respected team and huge
study. https://journals.sagepub.com/doi/10.1177/13623613221081343
https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00203/full
is also useful in terms of autism and
crime. Much more likely to be victims.
No more likely to be criminal.
https://link.springer.com/article/10.1007/s10803-019-04119-5
Another autism and crime paper, noting
that "A diagnosis of autism was associated with a decreased risk of
committing cyber-dependent crime".
Yes, people diagnosed as autistic were less likely to commit
cyber-crime.
Integrity and autistic people. Lots of newer work on this, e.g.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945921/
is research showing autistic children
play more fairly with other children.
https://www.sciencedirect.com/science/article/pii/S1750946718300722
In this one, the autistic participants (20 Uni students)
were less likely to tell lies for their personal gain than the non-autistic
students.
Using autistic senses to protect others?
https://www.sciencedirect.com/science/article/pii/S0891422218302531
Autistic children demonstrated excellent background-scanning abilities in
classroom learning situations, and it did not stop them learning.
Some would argue that having individuals who are better at
scanning the environment rather than just the social situation is useful. For example, being first to smell escaped gas
or forest fires, hear approaching predators, etc is a potential societal
advantage. Do many autistic people need
ways to tune out oversensitive senses?
Absolutely they do. Nevertheless,
those senses can save lives. Lots of individual accounts in books, online, etc.
Personal anecdote – in 2018 I was in
Hawaii, hours before the volcano erupted.
I could smell the overpowering (for me) stench of the rising gases two
hours before anyone else on the entire tour noticed it. It’s not a scientific sample, but it’s worth
bearing in mind when textbooks tell you that autism is a bunch of deficits.
Most autistic people have a good Theory of Mind
What about Theory of Mind?
(The ability to understand that other people have different thoughts and
ideas?). After all, for decades we've
been told that all autistic people lack this. Well, no. Huge piece of research showing there were
seemingly a series of horrible misunderstandings. https://psycnet.apa.org/fulltext/2019-75285-001.html
Autistic people have empathy, but it may look and sound
different
https://link.springer.com/article/10.1007/s10803-021-05307-y#Sec18
is a 2021 study showing that the 22 autistic adolescent males showed equal
empathy to the nonautistic ones.
https://onlinelibrary.wiley.com/doi/10.1002/aur.3197
is yet another study, this one in 2024,
showing autistic people had as much empathy as everyone else.
The large piece of research by Chris Bonnello (2018) linked
above also looked at results for those autistic people who also had learning
difficulties, or who also were non-speaking:
Autistic people have a good set of social skills…with other autistic people
Meantime, brilliant new research from Crompton & team
showing that autistic people genuinely do speak a different social language,
and work very well with other autistic people, collaborating and sharing. The problems happen when there's one autistic
person and one non-autistic person trying to collaborate, because both
misunderstand one another. https://salvesen-research.ed.ac.uk/people/edinmind
Here's another, showing that same observation that actually
we communicate just fine with one another.
It appears to be a misunderstanding between neurotypes, not a 'deficit'
on our part.
https://macsphere.mcmaster.ca/bitstream/11375/25433/2/Salt_Mackenzie_2019April_PhD.pdf
Here's another showing that autistic people communicate well
with one another and enjoy one another's company (generalising of course) at https://journals.sagepub.com/doi/abs/10.1177/1362361320924906?journalCode=auta
Another? Sure. Here's a big one from 2020. Same findings -
autistic people get on fine with each other (generalising). https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full
Have another: https://osf.io/preprints/osf/efvbc
Yes, here we are again, with autistic
people thriving in each others' company and enjoying their communication
together (generalising).
It makes the info in the current diagnostic lists, and the 'checklists for progress' very problematic, doesn't it. Most of it is now hopelessly outdated. Some of it may have done awful damage to autistic lives.
“But we should be curing autism! What about the Severe Ones? Think of the Cost!”
Nearly all do not want a cure. This was the result from
asking a huge number of autistic people who are e.g. non-speaking, or have a
learning disability. (Autistic Not Weird website - links above). Similar views can be found in a lot of other spaces,
books, sites and pages.
Respect individual
choice, of course. But, what on earth do
we mean by a cure? Often what people
mean is that they are e.g. in pain, and wish someone would sort that out. Or, they are lonely and isolated and wish
people would care. Or, they are forced out
of education and any prospect of a life without poverty, in a society that
enables deeply misleading information and hate materials to appear in the Press
on a regular basis. Or, they have had a
life of being told they are a cost, a burden, a negative – and end up feeling
that way. The cost thing annoys me; the
underlying cost figures were largely based on asking a group of parents to guess
some costs, without also asking them about savings. It also assumed that all of us sit around on
sofas all day, not working, and doing nothing for society, which is about as
far from the truth as it’s possible to get.
But that’s a research story for another day, eh.
Autistic people are generally absolutely fabulous and I am
delighted to share life with so many and listen deeply to them, learning what
can make a big difference in their lives.
I thoroughly recommend that approach.
Meantime, my huge thanks to everyone who is working so hard to make an actual difference to autistic lives, to the benefit of the whole of society.
Thank you for reading.
