How to help an Autistic

Last year I was sent this wonderful Ted Talk to listen to. I wasn’t sure of its relevance at first, but it soon became clear.

Here it is, well worth a watch: Ernesto Sirolli: Want to help someone? Shut up and listen

It got me thinking about so many of my problems, and they are all based in connections. They are all based between me and others.

The Ted Talk is about being an NGO in Africa, not about Autism or disability, but the comparisons are stark.

The way that our Western eyes viewed Africa as either Patronising or Paternalistic… that’s how people view disabilities too.

The way those who want to help wander around trying to come up with solutions, without asking the communities they are trying to help… that’s how people have traditionally approached helping people with Autism.

Over and over again what Ernesto says strikes a chord with me; if people do not wish to be helped, leave them alone. Many Autistics are successful and happy and loathe the patronising idea that they need anything from anyone. Leave them alone.

I once approached a Government representative to ask about why there wasn’t the Mental Health Care Provision needed for Autistics in my area. I had looked into what was available and there was no care specifically suitable for those with Autism unless they were in extreme crisis.

The response I got was Paternalistic. It didn’t address the issues I was raising, it focused on me and what I needed at that time. I was confused. I didn’t need any help. I was fine. I wasn’t asking for me, but the assumption had been made. I was Autistic and therefore needed help, rather than I was Autistic and asking where the structure of support was for my community.

It left me feeling defensive and wrong-footed. As though I was asking for help for me that I didn’t need. I stopped communicating. Why? Because the communication was so draining that I was already spending time away from my family just to interact over a few emails. I didn’t want to waste more energy somewhere I was being belittled. I didn’t have it to waste.

I feel guilt for giving up. I shouldn’t. I have a Social Communication issue. That’s what Autism is. What I need to do to put the structures in my community in place, is exactly the thing that disables me the most. It’s a wall I can’t climb. I need help. But when I ask, people assume I need something else. They don’t listen.

We have no end of helpers who want to cure autism and remove what we contribute to the world, where are all the people listening? I know you’re there. You’re every neurotypical reading this. You’re everyone who wants the world to be a better place. You’re everyone who values neurodiversity.

I hear Autistic Artists stating time and time again their struggles with grant applications and the social interactions you need to perform to become known. Being an Artist isn’t about making art. It’s about interacting.

I lament the interactions I need to do to get myself published. It’s so much easier to write something, play with it a while and then write something else. How would I begin to do more? All that interacting will drain the life from me. When will I have that life to spare?

I write performance-poetry and force it on my nearest and dearest. How would I interact enough to reach further?

What if someone were able to market all the products of my necessary hobbies as they appeared? What if those boxes of whatnots and whatchamacallits saw the light of day?

What if those who needed an analytical mind could be matched with a person who has one, but doesn’t have the social abilities to discuss last night’s soap opera or seem friendly in a job interview?

We need connections.

As Ernesto says, people can’t do these things alone, they need networks. No one person can do everything. Not no one autistic; no one person. The difference is that Autistics are likely to have fewer connections than average people, and those connections may be more likely to have the same problems.

We have had our ignorant NGO-equivalents come in and stomp around like a herd of Tomato-drunk hippopotami. Can we now have the thoughtful people turn up and listen? Can we have a revolution in support?

I am trying to be successful as an island. I don’t want to move to the mainland, that would never suit me, but perhaps we could group a few islands together? Perhaps those who want to help can build some bridges between us all? With a thoroughfare to the mainland for essential supplies?

No more patronising. No more paternalism. Instead let’s build structures that last. Structures that fit the landscape that is there; that fit the mountains and valleys, the peaks and troughs of our abilities.

I’ve often joked with fellow Autistics that what we really all need is a Personal Assistant; someone to do all the admin in life, answer the phones, make all the plans, get us to the right place at the right time with all the right information and preparation.

But deep down i know it’s not really a joke. These are the things that make me deficient. These are the things that make humaning (it’s a word, from the verb ‘to human’) so hard at times.

Disability needs to be viewed through a different lens. We are not just here to exist, we contribute, we have so much to offer. Not just as mathematicians or engineers, but as artists, poets, dancers, musicians, writers, comedians: all those realms that require skills of social interaction as well as talent. We are ready and waiting, are you ready to listen? Are you ready to find other ways to include us?

As Ernesto says so eloquently, “You shut up, you never arrive in a community with any ideas… we become friends and we find out what that person wants to do… and then we help them go and find the knowledge, because nobody in the world can succeed alone.”

It is so hard to shut up. It’s so hard to put aside preconceived ideas. So very hard to sit on your hands and stay silent, but it’s how you help. It’s how you understand.

People need help to achieve. Those of us in communities with additional barriers really need help that doesn’t come with preconceptions.

It will spread. We will see those like us out there doing it, we will look for the network behind it, we will find that a structure exists, and all these amazing people, lost in isolation, will be revealed.

And the world will be made more beautiful by it.

Published by Rhi

34 thoughts on “How to help an Autistic”

  3. This!! Assumptions (such as those made by the abled toward the disabled, or by the neurotypical population toward the neurodivergent community), are useless at best and harmful at worst. I love your “I don’t want to move to the mainland” analogy–eloquently stated! Beautiful post, girl ❤️❤️

    Smiles! 😊
    ~The Silent Wave/Laina 🌟🌟

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  4. Your analogies are sound, and as the closest to neurotypical in my branch of the family, with extended family that really doesn’t get any of us most of the time, I really appreciate what you say. I often find myself acting as personal assistant to other family members, paying bills, following up on medical questions, etc., and I appreciate that I can do it more easily than they, so I complain only sometimes, but I also reach a point of overwhelm that drives me into my defenses and to seek isolation and peace. A pairing structure that would provide such help surely would take the pressure off family.

    “….a herd of Tomato-drunk hippopotami,” is now an image I can’t get out of my mind. Love your writing!

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    1. Thank you 😊

      That pressure can be really overwhelming at times. Make sure you do get the time to recover.

      A structure that could be adapted for need would be brilliant. A combination of everyone working to their strengths is the ideal.

      Thank you so much for your feedback.

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  5. I absolutely love this! I’m going to go watch the video too 🙂

    My husband has sometimes said that he feels like my personal assistant because he does do a lot of the practical things that I can’t manage. I’m not sure what I’d do without him ❤

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    1. Same here. Husband ends up doing the day-to-day admin. He says he wouldn’t have it any other way. I marvel at how easily he does things I find so hard. But then there are other things where that works in reverse.

      The video is brilliant. Really worth a watch. Such a simple concept, but such a hard one to do well.

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      1. I just finished watching it! Excellent concept! The shut up and listen idea is one that really drew me in when we started attending Quaker meetings a few years ago. A woman spoke at the meeting about some work that was being done in Central America and how the people in the area told her that they were the only group that had bothered to listen to what the local people wanted and needed.

        Everyone else had come in as a paternalistic, “We know what’s best for you and will help you do it.” instead of looking to the local people for guidance. Instead of helping them with, say, their traditional building techniques, these groups would come in and show them how to build houses the “right way” with imported materials that created homes that weren’t usually suited well for the climate. So, making the people reliant on other systems instead of more self-reliant using the tools and materials that they actually have access to.

        A few years ago I read a book to my children about the Habitat for Humanity organization. It was a good book overall, but they had a paragraph about going to other countries and helping them build houses the “modern way” – so I stopped reading and had a great discussion with my children about why that was problematic and probably not all that helpful for the communities in the long run.

        So, this is a topic that’s very important to me 🙂 I’d never thought to apply it to our autistic community though! Thank you so much for bringing those two issues together for me ❤

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        1. You’re very welcome. It’s a subject I’ve always been interested in. Funnily enough I was explaining a similar thing to my children a few weeks ago, about how dangerous tampering with societies can be and all the unexpected side effects.

          I was just musing about the Ted Talk to Flojo this morning and she said “That sounds like it needs its own blog post” 😊

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  6. Your statement that no help was available to Autistics ‘unless they were in extreme crisis’ reminded me of a concept that seems to be widespread, which is that you can’t even get a diagnosis unless you are ‘suffering’, because the diagnosis is seen as the key to services (which then turn out to be scarce anyway). I know this wasn’t really the topic, but it is something that is troubling me at the moment, being someone who is cautiously, slowly edging their way towards a possible self-diagnosis. The thought that I can’t be autistic because I’m not suffering enough is hard to push away.
    On a similar note, I know from conversations with disabled people that it is difficult to get the help you need, because help comes in ‘bundles’, like your phone contract. If you need help with some things but not others, you might have to make yourself more helpless than you really are in front of the authorities in order to access the ‘bundle’ which contains the help you need, even if you don’t need the other bits.

    On a different note, I really liked your idea of a group of islands. I never liked the ‘no man is an island’ thing, because I would prefer to be an island, but not completely isolated. Your image of a group of islands really appealed to me, it’s so well put. Let’s form an archipelago!

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    1. Yes! Archipelagos all the way. I love that word. It always makes me smile for no particular reason.

      You’re right that not fitting into any convenient definition of “needs” is really problematic. The last thing people want to do is get to crisis point before support is available.

      The impairment criteria is also an issue. I don’t think my trusting people, finding lying difficult and inability to understand the point of small talk are impairments. I think it’s everyone else who is impaired by this cumbersome need to constantly interact on a banal level 😄

      I still don’t think I’m suffering enough. I think that’s a good thing. It doesn’t change how my brain processes the world.

      Thank you do your comment 😊

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  7. “Structures that fit the landscape that is there; that fit the mountains and valleys, the peaks and troughs of our abilities” + a personal assistant of course (mine is exhausted!) Beautiful, full of hope and vision. Love this, and all the comments. Thank you.

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  9. I think I need an Agent but can’t afford one and quite possibly ifI could the Agent wouldn’t understand where I’m coming from.

    For instance one problem i have with mainstream is that I don’t paint in Series and whilst i’m included in group exhibitions and even invited to exhibit for payment in Regional Artists’ shows I find it difficult to fulfil the criteria for a solo exhibition.

    The status quo is Series .. like 30 paintings on same subject … not how I work/relate.

    I don’t paint by ‘ recipe” but through relationship with the paint and inner self. My work is more creative than imitative and that can be a problem if one doesn’t have the support of influential status quo people.

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    1. We need agents to specialise in neurodiversity, don’t we? People who can understand and facilitate.

      I love that your work jumps from subject to subject. Like a true train of thought leaping from something to something else seemingly at random, unless you can catch the thread.

      That to me IS a recipe. It’s perfect.

      I love art, but I want to jump from this to that. When I see too much from one theme at once, my brain starts to filter out information as unnecessary. It’ll only notice the differences, and that can mean missing out on the ‘whole’ of the work in front of me. They’re somehow diluted (I hope that makes sense).

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      1. Exactly! Also the impact is capturing the freshness the unique rather than the conveyor belt production.
        It is “expressing’ relationship to paint with paint and also of self to inner self in relation to paint and whatever triggered the feeling and action.

        Communicating from within rather than recording the external.

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        1. All those words = perfect sense and utter beauty

          I remember being criticised at school for my art not having a continuous theme. I couldn’t understand why other people couldn’t easily find connections between everything. I remember doing extra pieces to just fill in the gaps that other people couldn’t.

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  11. Thanks, Rhi! I hope you’ll keep going with this topic! I’m decent at building bridges, and I’ve shut up and am listening😊. But there’s still a gap between what I can offer/contribute and the folks I want to support- communication that’s understandable on both ends. I use speech, writing, gestures, demonstrating, etc. but my beloved peeps don’t so much. I watch and listen, but when the communication languages I understand aren’t being used, there’s a gap. We all agree the solution isn’t to wait until my peeps are in crisis! The only option I know is to guess what their needs are based on what I know (which is paternalistic for sure!).
    Are there people or resources “out there” that have addressed this critical gap? I’m not expecting you to know or solve this either, but I truly value your knowledge and opinion!😊

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    1. Years ago I “taught” a non-verbal ID Autistic child Art… that is how it is usually expressed but in fact I did not “teach” him anything, i provided the materials for him to explore, use , and most of all Enjoy!

      To assist in providing an awareness of different colours and their potential I’d limit Joe ( fictitious name) first to a primary colour and white in half an egg carton, he’d have a large paint brush and water container and was free to mix either by using the empty egg spaces or directly on the large sheet of cartridge paper.
      Before commencing painting I’d write his name boldly at the top of the sheet and we’d say his name together.

      He was them free to experiment, explore and bring huge smiles to his face.

      Next we would explore what happened when we introduced say yellow and blue … no white … I’d demonstrate putting the lighter colour down first and then adding bits of the darker, blue, we’d say the names of the colours, yellow, blue and then green.

      It did not matter if he could say the names of colours or not , it was a ritual I created and he could hear and if he chose he’d continue to plaster on the paint , excitedly using the brush.

      There was no mention of ” subject matter” no ‘ end result” it all was the process of doing and enjoying finding the magic that mixing colours can bring.

      The end result was a visual expression of Joe’s experience and as thus it was ” Joe’s painting”.

      I hope the above is relevant to your query lisap63?

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      1. Art is definitely a fantastic way to communicate and share something side by side.

        I love that!

        When I worked with autistic teens a long time ago, I encouraged them to draw any concept they wanted to remember (they were verbal, particularly struggled with concentration and memory). It was incredible the change. This one boy went from being completely disconnected, to actually being enthused and understanding what was in front of him. Without me doing anything extra to “teach” him.

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    2. I love that you’re listening! I know so many brilliant people are 🙂

      The problem is that we’re dealing with so many individuals that there is no one answer. And because of the different methods of communication, there’s not even one way of finding out that answer.

      Listening can mean just watching for a positive or negative response and responding to that, rather than saying “this is what I would like, so this is what you will like”. It sounds to me like you’re very much listening already

      As for resources, I don’t know of any specifically, there could be some in your local area? If they’re there and you don’t know, then that’s another communication gap!

      I think a lot of this comes down to the power balance. When people come to help they are usually the ones with the power, they have control over what will happen and the resources allocated, there can also be an implied threat involved if they are someone like the police or social services, you would want to have them on side.

      What is needed is for the autistic person to have the power. They are the “boss”, the person who comes in to help is their “employee”, and their primary role is responding to the needs of the individual.

      It’s not necessarily that the individual needs help at that time, but that they know that resource is there.

      So keep responding to needs as they appear. Keep reassuring that you are there and can do set tasks (whether it’s phoning people, packing bags, helping arrange something) and then step back and wait and see if help is needed.

      Sometimes what I need most is to know that I have a safety net, I don’t HAVE to do something alone, but because I have that, I am more able to risk doing it myself.

      Or reassurance that tomorrow I can rest.

      If someone keeps telling me I NEED to do something on their timetable, I retreat. It’s too much. There’s no escape route.

      I hope my rambling answer makes some sense 😊

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  13. This is so interesting! So that’s why my art course after I left school seemed to be such an incomprehensibly dismal failure. I always knew it meant something that I needed to understand, but couldn’t. Oh bugger! What a waste of all those years feeling a “need” to do art, but thinking that because what I produce doesn’t fit with the right pattern, that there was no point. This is making me sad and joyful at the same time, that I might now try again and feel good about it. Sorry If I’ve gone way off topic but I couldn’t keep it to myself. Thank you. This is doing me so much good!

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