I was at the launch of MIND's guide 'Supporting people living with autistic spectrum disorder and mental health problems' on Friday. It was a really interesting event and I hope their toolkit will help practitioners provide better mental health support to people on the spectrum.
Several of the talks highlighted how important it is to find out the service user's perspective and opinions. i.e. the views of people with autism.
This is true. It's not just important, it is fundamental.
Here's some notes from my experience of creating keyring cards that work for people with autism/on the spectrum:
[Note: I'm not autistic, so I have no right to say which terms are acceptable. So throughout this post I've used is a selection of terms that different autists have told me they identify with.]
Find people with autism to consult. Social media is great for this.
Read things written by Autistic people. Blogs, social media, stuff like that. My experience is that people who state their spectrum-osity in their SM profiles are also good people to consult about products - they tend to be confident with their difference and not afraid to tell me when I'm getting it wrong. That way you will hear their perspective directly. Medical professionals and support charities might know lots, but if you want a product to work for an autistic person then professionals and charities should be background research. Perspectives gained directly from people with autism should take precedence.
And once you have a design in progress: keep consulting. All my autism related items have been repeatedly fine-tuned by spectrumites - and as a result they are far better and far more useful than they would otherwise have been.
Have a clear purpose for the product. And make sure that the purpose is one that autistic people think is important. When deciding the purpose it helps to find out the views of a few different people with autism on the issue you hope to address, and keep researching until it is something that makes total sense to you and you can relate to. 'Helping an autistic person' is not good enough. 'Making people understand how important noise cancelling headphones can be for an individual with ASC, so they don't try and make the individual remove them, because that must REALLY suck' is fine.
Accept that no product will work for everyone on the spectrum. Everyone is different, both in how their autism affects their lives and in personality. Trying to create a one-size-fits-all will usually mean something so watered down and generalised that it works for no-one. There is no problem creating a product that works for some, provided you don't pretend that it should be used by everyone.
Make sure the design is one you would be proud to use/show. Autism doesn't stop people having good taste. If it's aimed at adults, make sure it is suitable for adults. I do this by using the same principles and basic design that I do for cards I use to explain my conditions.
Don't lose the humour. Avoid the trap of thinking that spectrumites don't get humour. They do. (Although of course the exact sense of humour varies between people). If you struggle with this, then spend more time with some autists in situations where they are comfortable and relaxed (preferably both in person and on line).
Only address one issue per card, and keep it clear and simple. The fewer words the better, and a good image means less words are needed. This makes them easy to read, easy to relate to, and gives the user power to say 'here and now, this is the piece of info you need'. Lists and paragraphs are fine, but if the relevant info needed in that moment is half way through paragraph 4, or at bullet point number 8 there is a real chance that the reader will miss it.
A specialist would say this makes it easier for the person with autism - but actually it makes it clearer for EVERYONE to understand.
How appropriate, clear, simple and engaging a communication aid is for the user AND the reader is what determines its effectiveness.
Anything aiming to communicate about autism needs to be presented in a way that gets neuro-typicals to drop their unhelpful attitudes and inflexible approaches to autism, and to embrace it as simply a different normal.
Several of the talks highlighted how important it is to find out the service user's perspective and opinions. i.e. the views of people with autism.
This is true. It's not just important, it is fundamental.
Here's some notes from my experience of creating keyring cards that work for people with autism/on the spectrum:
[Note: I'm not autistic, so I have no right to say which terms are acceptable. So throughout this post I've used is a selection of terms that different autists have told me they identify with.]
Find people with autism to consult. Social media is great for this.Read things written by Autistic people. Blogs, social media, stuff like that. My experience is that people who state their spectrum-osity in their SM profiles are also good people to consult about products - they tend to be confident with their difference and not afraid to tell me when I'm getting it wrong. That way you will hear their perspective directly. Medical professionals and support charities might know lots, but if you want a product to work for an autistic person then professionals and charities should be background research. Perspectives gained directly from people with autism should take precedence.
And once you have a design in progress: keep consulting. All my autism related items have been repeatedly fine-tuned by spectrumites - and as a result they are far better and far more useful than they would otherwise have been.
Accept that no product will work for everyone on the spectrum. Everyone is different, both in how their autism affects their lives and in personality. Trying to create a one-size-fits-all will usually mean something so watered down and generalised that it works for no-one. There is no problem creating a product that works for some, provided you don't pretend that it should be used by everyone.
Make sure the design is one you would be proud to use/show. Autism doesn't stop people having good taste. If it's aimed at adults, make sure it is suitable for adults. I do this by using the same principles and basic design that I do for cards I use to explain my conditions.
Don't lose the humour. Avoid the trap of thinking that spectrumites don't get humour. They do. (Although of course the exact sense of humour varies between people). If you struggle with this, then spend more time with some autists in situations where they are comfortable and relaxed (preferably both in person and on line).
Only address one issue per card, and keep it clear and simple. The fewer words the better, and a good image means less words are needed. This makes them easy to read, easy to relate to, and gives the user power to say 'here and now, this is the piece of info you need'. Lists and paragraphs are fine, but if the relevant info needed in that moment is half way through paragraph 4, or at bullet point number 8 there is a real chance that the reader will miss it.A specialist would say this makes it easier for the person with autism - but actually it makes it clearer for EVERYONE to understand.
How appropriate, clear, simple and engaging a communication aid is for the user AND the reader is what determines its effectiveness.
Anything aiming to communicate about autism needs to be presented in a way that gets neuro-typicals to drop their unhelpful attitudes and inflexible approaches to autism, and to embrace it as simply a different normal.
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