A is for Autism (and Assessment!)

This short article is a plea for better assessment, planning and understanding.

Just how individual is autism? It’s often said that when you have met one person with autism you have done exactly that – met one person with autism. I suppose what people mean is that autism is a highly variable phenomenon and no two people on the spectrum have quite the same style/ brand/ version of autism. It might be unwise to generalise.

Autism is about uniqueness and individuality that’s for sure. Folk on the spectrum are more individual than non-autistic people – that’s part of autism. Being unlike the usual or typical is what autistic kids often do exceptionally well.

But autistic children must have some things in common surely, otherwise the label or diagnosis wouldn’t make sense? Yes, they will all have a mix or blend of exactly the same abilities and needs as other young people on the spectrum, but the amalgamation of those characteristics will be unique to them. That’s why Lorna Wing and Judith Gould used the phrase ‘The Autistic Spectrum’ back in the 1970s.

Getting to know how a student’s autism ‘works’ and how it affects development, learning, engagement etc is a vital process for teachers and school staff.

There are no quick fixes and taking time to really understand how this person sees and responds to the world will be the key to more successful support. That means understanding everything about the person but especially getting to know how they are uniquely affected by autism - what’s their style, blend or version of autism.

Thankfully there are plenty of tools to help us do this so if we approach the task well equipped and with an enquiring and open mind, we will give autistic students the best start they can get.

Just How well do we understand autism in the 21st Century? Since Leo Kanner and Hans Asperger separately described autism back in the 1940s a lot has happened and a lot has changed. It’s also true that many things that were considered essential ingredients (in terms of abilities and needs) back then are still considered part of the autism mix now.

It has to be acknowledged also that there have been numerous theories and ‘findings’ about autism along the way that turned out to be at best dead ends or at worst downright untruths. In particular the search for ‘the cause’ of autism has taken us down a lot of erroneous paths, some of them quite disastrous. Many things have been proposed as potential or actual causes of autism, vaccines, diet, poor parenting to name but a few. In tandem with this there have been many claimed ‘cures’ for autism. Behaviour therapy, hormone supplementation, medication, electric shocks, auditory integration, hyperbaric oxygen therapy, and many, many more. The majority of these turned out to be not much more than quackery.

In 2021 there is a growing acceptance that autism probably doesn’t have a ‘cause’, much in the way that left-handedness doesn’t have a cause. A shift in attitudes away from thinking that autism is something that needs curing is also increasingly noticeable. Acceptance appears now to be a more ethical and realistic goal. This change has been largely driven by the autistic community who increasingly don’t see themselves as ‘broken’, disordered or in need of a cure!

Autism is getting bigger. Well that’s perhaps a bit of a crude way of saying that the numbers of children getting a diagnosis has increased every year since the two Austrian doctors, Kanner and Asperger first described it. Kanner, thought that autism was extremely rare. It wasn’t and isn’t. In the 21st Century there is a growing realisation that the autism spectrum embraces a lot of people and that autism is pretty common. Most countries now agree that it accounts for more than one percent of the population.

Where are the girls? That’s a question that is puzzling us all in our attempt to make modern sense of autism. Research suggests that there are about four males to every female on the spectrum as a whole. Why might this be the case? It could be that we fail to spot girls on the spectrum easily or that they are better at concealing social skill differences than their male counterparts. Perhaps the diagnostic criteria need tweaking? Perhaps there is a ‘female’ version of autism that is subtly different but sufficiently so to make identification harder.

Autism as a condition is increasingly seen as overlapping with other neuro-developmental conditions like dyslexia, ADD, ADHD, Tourette’s and dyspraxia. Interestingly these are all predominantly male conditions too! We don’t always know why or what the significance of this is. So, as autism is a ‘near cousin’ of these conditions and often co-occurs with them, perhaps we shouldn’t be surprised that autism turns out to be pretty ‘male’ too. Watch this space though as this is a research hot-topic!

The autism spectrum is pretty wide. By which I mean it spans a huge range of giftedness and disability. About half of all autistic people have a learning disability and half don’t. Some individuals will need a lifetime of intense support and others will be completely independent. In the SEND context ‘autism’ encompasses students with profound and severe intellectual disability and also gifted and talented pupils.

It would be wrong to think that autism is a sliding scale where a ‘lot’ of autism means learning disability and high support needs, and ‘mild’ autism (or high-functioning autism) means independence and a more ordinary life. This is almost never true. There are autistic kids with lots of language and so-called ‘high-functioning’ autistic adults who rarely or never speak. Sensory problems might not bother some but can make life intolerable for others and this is not linked in any way to intellectual ability.

There’s a growing recognition that watching out for a very uneven profile of skills and difficulties is vital in education settings in order to individualise teaching and support.

So that pretty much brings us back to the beginning. Getting to know, adapt to, and harness a child’s highly individual version of this fairly common condition is absolutely the way to go.

In short there are a group of needs that come with being human. At one end you have?important but basic things like need to eat, need for food, need for shelter. These are sometimes the easiest for schools to get right. In the middle there are needs that come with a diagnosis like asthma, autism or ADD. If we do a bit of reading, training, and listening we can meet these needs. True they are tricky sometimes but not impossible for educational settings. The third kind of very individual needs at the other end are the needs that come with being me! These are always hard to meet. To individualise things right down to this level is a Herculean challenge. These needs include things like hopes, fears, dreams, experiences, personality, humour, and ambition.

In autism it’s vital that we try to meet these last kind of needs because as a young child with autism once said, “autism is me and I am autism”.

Chris Barson 2021

Chris is author of The Autism Workroom, an online course for schools and child-care settings