The balance between helping autistic people and doing it for them (and how to get it right)

The balance between helping autistic people and doing it for them (and how to get it right)

During my work in special education, one story that really stuck with me involved a sixteen-year-old girl who came to us after a lifetime in mainstream schools. The most revealing moment of her first week came in an English lesson.

She sat down with the rest of the class. The task was set and the other students began to work. But this girl did not.

Upon further investigation, this sixteen-year-old student was waiting for a member of staff to take her stationery out of her pencil case.

Why? Because it had been done for her throughout her whole life.

To be fair, one of the hardest things to do as a teaching assistant is nothing. This is the same school where I was paid to stand in maths lessons with teenagers studying for their GCSEs, and do as little as I possibly could – because the students would not have the luxury of my support in the final exam. However, since it was also the same school where I changed soiled pads for students who struggled with basic self-care, there is obviously no one-size-fits-all answer to the main question of this article:

How do I get the balance right between supporting this person and building their independence?

This question is so common among Autistic Not Weird’s Facebook community [all links open in new windows], that my Patreon backers voted for it to be the subject of my next article. So, here’s my take as a former teacher with Asperger Syndrome, who still works with students across the autism spectrum to this day.

Oh- and this question may be written from a former teacher’s viewpoint, but it’s not necessarily for students. It’s not even specifically for young people either. Read the advice and adapt it to your own situation.

First off, a diagram. Because I like diagrams.

Advantages Disadvantages If you DO give support to an autistic person… The right support can make learning accessible to them.

The promise of support can relieve anxiety.

It’s just generally a kind thing to do. The person may end up depending on the support.

The support may withdraw opportunities to expand their comfort zone.

It’s often very difficult to tell when the support is appropriate or needed. If you DON’T give support to an autistic person… It encourages independence in thoughts and actions.

It can be good training for later in life.

If they succeed, the confidence boost can be amazing. The person must deal with their anxieties alone.

They may feel isolated.

They may develop an assumption that others will not help them either.

Did this diagram make things clearer, or did it just highlight how difficult the dilemma is?

I suspect the second, and that’s fine. It is a complex issue, and it should be seen that way if we want to make informed choices.

To illustrate, I’m going to offer some example scenarios and ask you to consider them using the diagram above. Choose whichever situations may be relevant to you.

Scenario 1: You’re driving to the shops to buy some food with an autistic child/teenager, and as you pull up the handbrake a thought passes your mind: my son/daughter has never gone into the shop alone before, but I wonder if they’re ready?

Look at the diagram, have a think about advantages and disadvantages, and make your decision.

Scenario 2: You’re a mainstream schoolteacher preparing a performance where each of your pupils reads out a sentence or two. The autistic pupil in your class is a very capable reader but is frequently anxious. Do you encourage that child to read their sentences independently in front of the crowd or not?

Scenario 3: Your adult autistic child/friend/colleague is terribly anxious about applying for jobs. They ask you to fill out certain parts of the job application form. How much do you help, if at all?

So what’s the right answer in each of these scenarios?

Well, it depends on the individual. And even with each individual, it may depend on their state of mind at the time.

But I can give you some extra insights, in no particular order.

1. Continuous support can lead to underestimation.

There was one student with severe learning difficulties who struggled with almost every aspect of life. (Oddly enough, to this day he remains the happiest 12-year-old I have ever, ever known. For the record, this is the student who appears in point #1 of Five Ways to Damage Autistic Children Without Even Knowing .)

I was led to believe that he was incapable of most things. On principle though (as I said in the other article), I always engaged him in conversation. A child’s lack of speech is not an excuse to avoid talking to them. Ever.

One day we were tidying up after a cookery session. I say ‘we’, but he was watching for the most part. After all, tidying up was probably beyond his capabilities. Motor skills, thought processes, planning ahead… it’s all very complex when you think about it.

Partway through, I looked at the cups I was holding and asked “hmm, where do the cups go?”

Out of nowhere, he reached to his left and opened the exact cupboard.

I didn’t even ask him to – I simply asked where they went. He took that action entirely by his own initiative.

Two conflicting feelings struck me at that moment: sheer joy at how this student had done something I’d never seen him do before (I’m sure plenty of readers can empathise)… but also guilt.

How many other abilities did he have, that his school staff assumed couldn’t exist?

How many other things could he have been taught to do, had he not been surrounded by people who opened every single cupboard for him?

As I say during my talks, several years later: if you make negative assumptions about somebody’s prospects, it’s often a self-fulfilling prophecy.

2. People are ‘lazy’.

One quote from my mathematics professor has stuck with me to this day:

“I encourage you to be lazy. If you are lazy in a clever way, people will think you’re efficient.” Prof. Anvar Shukurov, 2007.

I could go into several reasons why people like to be lazy. And actually, not all those reasons are negative. There’s even an evolutionary case for being lazy: in a contest between those who can fulfil their physiological needs without spending energy, and those who need to spend lots of energy, who has better survival chances?

Honestly – and I mean this in no negative way whatsoever – people prefer to be lazy if they possibly can. This means if we get the chance for someone else do something for us, we’ll usually let them. Let’s face it, if someone offers to fetch us a snack from the fridge, we’re more likely to say ‘yes please’ than ‘no it’s okay, I’ll walk over there and get it myself’.

(This, of course, leaves aside the issue that autistic people can often have the appearance of being lazy when it’s actually the impact of executive functioning/anxiety issues. That’s a topic for another time.)

So how does this apply to supporting autistic people? Well, the main thing I’m thinking is this:

When offering support to an autistic person, it’s better if the support is needed by them, rather than just convenient for them.

If your support is for anxiety relief or as a learning tool, that’s great. If it’s simply one thing less for them to do, that’s not so great.

3. Safety nets help, even if they’re not used.

Sometimes, it’s the simple offer of support that enables someone to achieve independence. Let me give you yet another analogy:

Imagine you have to walk a tightrope for five-metres… over a chasm with a hundred-metre drop. It doesn’t matter that you have no tightrope experience. You have to walk it. And there’s no safety net.

What do you think your chances are of lasting the whole five metres?

Now imagine exactly the same scenario, but there’s a safety net just below the rope that stretches the length of the chasm.

Now that the risk of death has been removed, what are your chances of lasting the whole five metres?

I genuinely believe that with the safety net, I’d be more likely to reach the other side.

Yep, I would be more likely to fall to my death in one scenario than fall into the net in the other. I’d be less nervous, less afraid of failure, more relaxed physically and mentally, and my feet would twitch less.

Even without the need to use the safety net, my chances of success would improve.

If you find an autistic person feeling really really nervous, be sure to let them know that support is available: not with the specific intention of giving it, but just in case they need it. Encourage them to attempt the task independently, but let them know the safety net does exist. They may then surprise you by doing everything perfectly anyway, whereas the pressure of no support might have made them too anxious!

4. Responsibility builds people

Speaking as a former teacher and public speaker, who used to be a teenager with no leadership qualities (and a four-year-old with the language skills of a two-year-old), I can absolutely assure you that there is no such thing as a ‘natural born leader’. Leadership skills are gained from experience and willingness to learn, not womb magic.

In my case, it was my old Boys’ Brigade captain who taught me how to lead people. He is directly responsible for me becoming a teacher, which nobody saw coming when I was a teenager.

I wrote a whole article on how my Boys’ Brigade company made me more than I believed I was capable of being. I’ll save you some time by providing a link here . But one thing I learned and believe without a shadow of a doubt:

Responsibility builds people. Especially the people who “don’t seem cut out for it”.

Whether it’s responsibility over a sibling, or a pet, or part of the family business, giving a young person (autistic or not) some non-academic responsibility can do a hell of a lot to help them play to their strengths. Or, like in my case, develop strengths they didn’t even realise they had.

I was thrown in the deep end by my Boys’ Brigade captain, but he was always there offering support. Offering support, as opposed to giving it by default. And ten years later, I became a primary school teacher.

And to finish:

I occasionally give a talk entitled ‘Top twenty facts to bear in mind when working with autistic students’ when I deliver speaking engagements. With apologies for the massive spoiler, number one is split into two parts:

1a: We need less support than you think

and

1b: We need more support than you think.

Getting this balance right is hard. Most of the time I want to be left to do things without being told how to do them (especially if I’m being told to use a method that doesn’t resonate with my brain), but some of the time I really do need clear and specific support.

Sometimes, as autistic people, first and foremost we need our strengths to be seen. Sometimes, when our deficiencies or anxieties take the lead, we need to be supported. And the best way of distinguishing between the two simply lies in knowing us as people.

And genuinely root for us. This picture explains why.

To be honest, I think 1a is more important. Give autistic people as much independence and responsibility as you can, but let us know a safety net exists before just leaving us totally alone.

I hope this helps you, in whatever capacity you support an autistic person. If this is your first visit to Autistic Not Weird, feel free to visit our large Facebook community , where everyone is really, really nice. And since Autistic Not Weird is soon to be my only source of consistent income, there’s my Patreon page (full of perks!) if anyone would like to help me build my career.

Take care,

Chris Bonnello / Captain Quirk

Further reading:

Teacher Balance – Support and Independence. This piece is very good. I found it by accident whilst searching for pictures (one of which I have borrowed for this article), and it covers important points about this topic accurately and concisely.

Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel series may interest you!

Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing intense action with a deeply developed neurodiverse cast.

Book one can be found here:

Amazon UK | Amazon US | Amazon CA | Amazon AU

Audible (audiobook version)

Book Depository

Review page on Goodreads

Copyright © Chris Bonnello 2015-2020

(Cover photo: Danilo Batista on Unsplash)

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