Of Course, This Is a Good Course (or is it?)

by Nanny Aut

I often see an advert for an autism course I took. I took it out of curiosity to see whether the improved quality of research and the very active dialogue in the autistic community about what we need has filtered into mainstream. 

It hasn’t. It was really tough to take this course seeing the terrible way that those who are supposed to support us see us.

What was most disheartening though was the number of non-autistics commenting on this advert,  raving about how good this course was. How much it helped them understand the ‘people with autism’ they worked with.

Of course they like it. It was a course written by non-autistics for the approval of non-autistics. It had all the ableism and observational false assumptions you would expect from a course like this. 

And non-autistics love it because it agrees with their false assumptions and doesn’t challenge their in-built ableism. It tells them what a hero they are for taking on such a challenging minority. And how they are the saviours who will make this person’s life better.

Except – if they follow the advice in this course – it won’t make the lives of the people they support any better. There was zero mention of lived experience, or listening to the person you support and giving them the autonomy to decide what they need for themselves. 

There were case studies where the struggles of a ‘person with autism’ were outlined followed by non-autistic guesses as to why they might be struggling – and many of the guesses were way off-base highly coloured by a ‘poor people with autism what a tough life they lead, they can’t process anything correctly’ lens.

Those of you who are more familiar with neuro-affirming language will notice that I deliberately used ‘people with autism’ because that was the preferred term in the course – a giant red flag in itself.

They did acknowledge that ‘some’ prefer the term autistic, which is pretty big of them, if not accurate – unless you consider over 90% of autistic respondents in a number of surveys ‘some’. Nowhere though did they suggest asking the individual. Of course not, how much value does the opinion of someone you consider defective have?

After the course was over, they asked for a review – I gave one and got the stock ‘I am sorry to hear you were disappointed in the quality of our course. Please submit your issues and we would be happy to discuss this further with you.’

And to give them the benefit of the doubt, I did –

“I took your autism course and was saddened (but not surprised) at the poor quality of the content.

Rather than offering insight into the autistic experience using authentic autistic voice speaking to lived experience, poor guesswork by observers was offered instead.

Autistics were pathologised and painted in a negative light with a heavy leaning on the medical model.

The research used was out of date and doesn’t include any participatory research or even fundamentals like Monotropism or Double Empathy.

It reinforced ableist mindsets that leads to the continued maltreatment of autistics by people who genuinely believe they are being supportive due to the material you provided.

It is frustrating that harmful material like this is funded, while more effective, supportive and most importantly more accurate material is not.”

I admit, I was not surprised to find that they chose not to respond to this. After all, in their eyes I am a defective ‘person with autism’ – not worth listening to.

This course is government-funded, fully accredited and highly approved of by non-autistics. And it is bad, really bad. 

I won’t name the course, because the majority of autism courses are equally bad. It isn’t fair to single just one out.

So how do you spot these terrible courses, how do you identify the ableism when our culture is so steeped in it and your own internal ableism has probably never been called out or challenged?

Here is how to look at these courses with a properly critical eye.

1. If someone spoke about me the way this course speaks about autistics / ‘people with autism’ how would I feel?

The course I did caused me a lot of emotional trauma realising the terrible way the majority choose to view us and talk about us. Seeing us as defective and needing to be fixed leads to some extremely poor support decisions by those who wish to provide that support.

2. How much of the research cited is either autistic-led or co-produced by autistics? 

There is a LOT of out-dated research by ‘acclaimed’ researchers who were too arrogant to even consider talking to autistics themselves. They based all their conclusions on observations and assumptions of non-autistics, including their own highly biased assumptions. And these have led to some extremely harmful myths such as ‘lack of empathy’ or basing diagnosis on the presentation of a white middle class male child.

3. How recent is the research used? 

Anything before 2000 is definitely under question. This was the first time that autistic voices started to be listened to and researchers started to realise how wrong their initial guesses were. And every year, this keeps improving although there is still a lot of research poisoned by the fruit of the initial bad tree. The rule of thumb is to discount research prior to 2000 and give added weight the more recent the research is – especially added weight to qualitative and co-produced research.

4. How prevalent is genuine autistic voice in the research? Not case studies of our challenges, but first-hand accounts of our lived experience.

Autistic experience is internal – observers can only guess based on THEIR lived experience, which usually means those guesses are incorrect. However, these guesses will sound valid to other non-autistics because their lived experience matches that of the observer.

5. Is the focus on fixing the person or the environment? 

This course did acknowledge that sensory challenges are often a problem for us and did suggest some changes to the environment may help. However, for the most part the focus was on adapting our response to the environment. How to modify our behaviour, not the damage caused to our nervous system.

You could also add ‘Does this course use neuro-affirming language – such as autistic instead of ‘person with autism’ to the list, but more courses are now picking this language up as ‘buzzwords’ without any significant change to the material underneath.

This matters.

Nothing changes unless the education about autism changes. And while these terrible courses are funded, accredited and acclaimed by non-autistics, harmful ideas and harmful practices will continue to perpetuate.

I am not saying buy my courses – only the free ones on YouTube are currently available anyway. I AM saying be more critical in the courses you take and start adding non-autistic voices to the autistic voices who are already begging for change.

And maybe make a point of checking that ANY course you participate in, on ANY disability is based on lived experience and at the very minimum co-created by those with lived experience of that disability.