Decision-making on autism: Nothing About Us Without Us in practice

This is a guide for people and organisations who find themselves in the position of making decisions affecting autistic people – for example, when planning services and events or formulating policies, research projects or resources about autism. Much of this will apply to other groups of disabled, marginalised or disadvantaged people, but naturally we don’t wish to speak for any other groups.

We want you to think about why autistic people need to be included in these decisions, and what that might mean for the distribution of power in making them. Above all, we want to give you tools to help you do this, so that if you are doing something about us, you do it with us.

Why involve autistic people in decisions about autism?

If you are not listening to autistic people, and taking what we say about our own experiences seriously, you will make worse decisions about autism. You will leave yourself open to misunderstandings and mistakes that most autistic people would spot at the outset, and you will shut yourself off from good ideas that non-autistic people would never have thought of.

There may be people who are not autistic, but have deep and genuine insight into autistic experience. Even so, if you want to know who they are, you should be asking autistic people. Too many self-professed autism experts misunderstand autistic experience at a basic level, and the same goes for family members who are not on the autistic spectrum themselves. To be clear, this is not really their fault; it is perfectly normal to have difficulty understanding the experiences of people who are very different from yourself.

Even within the autistic population, the diversity of experiences and support needs means that none of us automatically have insight into all autistic experiences. Many of us have co-occurring conditions which can change what autism means for each of us. However, autistic people do have a major head start in understanding what other autistic people go through, especially if they have spent much time with the wider autistic community. The diversity of the spectrum is a reason to talk to more autistic people and representative organisations, never an excuse to talk to us less.

Family members and professionals bring their own insights: they may have been exposed to autistic experiences, and helped autistic people, in ways that some autistic advocates haven’t. They also know all about the challenges that come with their own roles, and it is absolutely right that these groups should be included in conversations about autism. What should not happen is for them to dominate those conversation, as they historically have done. Most of the big autism organisations were started by parents, and very few of them have meaningful autistic input at the highest levels. Autistic people have been talked over too often, sometimes with disastrous consequences.

Non-autistic voices should not be prioritised over those who are autistic themselves, and must never be treated as interchangeable with our own. What parents and professionals want and need is not always the same as what autistic people want and need. It is only natural that their perspectives are different from ours, which needs to be respected and acknowledged. Where relevant, autistic parents and autistic professionals should usually be sought out, alongside others, for their ability to see things from multiple angles. Many autistic people work with or have autistic children, including some with very high support needs. Please listen to them.

How much should autistic people be involved?

The short answer is surely as much as possible.

It obviously depends on the nature and scale of what you’re working on, though, and also the experience and expertise of the non-autistic participants. It is possible for non-autistic people to form a good enough understanding of autistic experiences to do very useful work. Some even have some understanding of autistic culture and community. It’s okay that not everyone doing things about autism is autistic. However, everyone working on anything to do with autism ought to be prepared to listen to and learn from autistic people at any time. Accept that you might get things wrong; keep an open mind and be ready to learn.

It is good to be aware of tools like Arnstein‘s Ladder of Participation, and consider what level of participation is appropriate and feasible for your project. For some things, mere consultation might be good enough, but it is not the same thing as active participation. For that, autistic people need to be given some actual power over the decisions being made. Otherwise, it is much too easy to ‘consult’ once you have already decided what you are doing, or to convince yourself you know better than the people you’ve consulted with.

How to include autistic people in decisions about autism

Let us look now at some of the ways that organisations often fail to ‘closely consult with and actively involve’ autistic people in decision-making processes about us, as required by Article 4.3 of the UN Convention on the Rights of Persons with Disabilities (CRPD), and how they can do better.

The first failure often comes right at the start, when ideas are being formulated about how to help autistic people. Too often, a project or approach has already been committed to, by the time a single autistic person is consulted about whether it’s a good idea. Not that you should stop at asking a single autistic person, if you think you’re onto something. The CRPD is very clear that representative Disabled People’s Organisations should be closely consulted by state parties to the convention. In this case, that would be representative Autistic People’s Organisations (APOs), with all-autistic or at least majority-autistic boards, and a membership that they are accountable to.

Sometimes a single autistic person is all it would take to flag up what a horrible idea something is, though, so that might be a good place to start.

Action points:

Have informal conversations with autistic people, especially ones with relevant expertise. You might find the hashtags #AskingAutistics and #DisabilityTwitter useful here, or groups like Ask An Autistic and Autistic Allies on Facebook. Perhaps you also know some autistic people who would be happy to be asked directly, although please be cautious of demanding work from people, or only talking to people who won’t want to hurt your feelings. Nobody owes you free labour or validation, but not everyone will have the confidence to refuse them. Look for local APOs to get more formal feedback. If you can’t find any, look for more general Disabled People’s Organisations and see if they can recommend anyone. We have some pointers in the Resources section below. Be wary when seeking advice from autism organisations that are not run by autistic people; many of the big autism charities do good work, and may give good advice. However, it is completely natural that they would favour autistic people who fit with the charity’s priorities, which may not always match those of the wider autistic community.

The next point of failure comes almost immediately after the first. Having initiated a project, hopefully with some kind of encouragement from someone in the population it’s aimed at, too many organisations then carry on for months at a time without consulting any more autistic people, or even running things by the same people who initially approved of the idea. Rather than seeking ongoing input, they go off and invest a load of time and energy into their chosen course. If and when they finally do go back to autistic people, it’s already too late to make really substantial changes.

Another sadly common error is to only make space for one autistic person. This leaves you vulnerable to mistaking one person’s ideas for general truths, and it leaves the autistic person vulnerable to being disbelieved about things things that another autistic person could have easily confirmed. It also puts a lot of pressure on that person; we should never have to think that if we can’t make it for any reason, there won’t be any autistic people in the room. Since there are all sorts of reasons why a disabled person might have to miss meetings or leave a project entirely, it is unfair not to build in some redundancy.

Note that not all autistic people are willing to be publicly open about it. This should absolutely be respected, and in many cases it should be possible for their contributions to be made without publicly identifying them. Even so, from the outside, including no openly autistic people looks very much like including no autistic people at all. If none of the autistic people involved are willing to be open about it, you probably weren’t involving enough autistic people in the first place.

Action points:

Most autism-related projects should have a budget for hiring autistic consultants; this is always a good investment. If for some reason it is impossible, you should still look for ways to involve them in generating and refining ideas, and make it worth their while. It is unfair to expect anyone to put in much work for free. Hire autistic people with relevant expertise, not only as consultants but also as fellow professionals. Hiring designers or copy-writers for a project about autism? Look for autistic ones. Never wait so long between conversations with autistic people that it’s too late to backtrack if they let you know you’re on completely the wrong path.

Finally, you should plan for autistic involvement at the termination phase of a project, and especially in evaluating how it went. Ask autistic people what they thought of it, whether it helped them, whether it harmed them. This might seem obvious, but we have seen studies where the only outcomes reported were based on the view of parents. Some autism-related projects are not primarily aimed at benefiting autistic people. Ask them anyway. Many things that benefit autistic people will make lives easier for others, but some things that make life easier for others will actually harm autistic people.

If a project goes well, the autistic community will want to hear about it. If it was well designed to help us, we will be very happy to help spread the word about it, and a thriving online autistic community means that good news can spread far and fast.

How not to exclude autistic people from decisions about autism

So far, we have focused on positive ways of including autistic people. We also need to acknowledge some of the difficulties involved, to help you navigate around them. These are all relevant to the inclusion of autistic people more generally.

Autistic people are often blunt. As a social difference or disability, autism is largely characterised by mismatched expectations among autistic and non-autistic people. Autistic people often struggle with social niceties, especially in face-to-face meetings, and more especially in stressful ones. Many have low tolerance for untruths and evasion, and are likely to tell you straight that you’re doing something wrong. We are liable to disregard conventional notions of authority and social hierarchies, sometimes offending people by not showing the deference they expect. If we perceive injustice, it can be very difficult to let it lie.

As a social difference or disability, autism is largely characterised by mismatched expectations among autistic and non-autistic people. Autistic people often struggle with social niceties, especially in face-to-face meetings, and more especially in stressful ones. Many have low tolerance for untruths and evasion, and are likely to tell you straight that you’re doing something wrong. We are liable to disregard conventional notions of authority and social hierarchies, sometimes offending people by not showing the deference they expect. If we perceive injustice, it can be very difficult to let it lie. Autistic people are often anxious. We may be afraid to speak out because we’ve been yelled at too often in the past, or ignored. Unclear expectations can be paralysing. We may also need time to gather our thoughts and get up courage to speak. Clear communication and patient facilitation are invaluable. Make sure that facilitators are aware of how difficult autistic people can find it to get a word in, and encourage the use of non-verbal signals, such as raising a hand, for participants to show that they would like to speak. Make sure that people can contribute in writing or by other means.

We may be afraid to speak out because we’ve been yelled at too often in the past, or ignored. Unclear expectations can be paralysing. We may also need time to gather our thoughts and get up courage to speak. Clear communication and patient facilitation are invaluable. Make sure that facilitators are aware of how difficult autistic people can find it to get a word in, and encourage the use of non-verbal signals, such as raising a hand, for participants to show that they would like to speak. Make sure that people can contribute in writing or by other means. Autistic people are often prone to overload. This includes sensory overload: bright lights, especially fluorescents, can be painful and make it hard to focus, as can scents. Noisy environments can make it impossible to hear. Over-complicated food might be inedible for some of us. We can also suffer from information overload – being expected to take in too much at a time, especially if it is from multiple channels. Even with something like emails, where we can deal with them at our leisure, we might hit a point where it’s just too much and we can’t think about it any more. Information should be clear and concise, but comprehensive. Follow principles of good information design: lead with the most salient points, highlight key information and use structure to ensure that people can see how to find out more. Avoid ambiguity, and take special care to make any expectations explicit.

This includes sensory overload: bright lights, especially fluorescents, can be painful and make it hard to focus, as can scents. Noisy environments can make it impossible to hear. Over-complicated food might be inedible for some of us. We can also suffer from information overload – being expected to take in too much at a time, especially if it is from multiple channels. Even with something like emails, where we can deal with them at our leisure, we might hit a point where it’s just too much and we can’t think about it any more. Information should be clear and concise, but comprehensive. Follow principles of good information design: lead with the most salient points, highlight key information and use structure to ensure that people can see how to find out more. Avoid ambiguity, and take special care to make any expectations explicit. Autistic people often appreciate details in advance. We may need to mentally prepare for new situations: who will be there, what will happen and when, what the space will look like, what is expected from us. Having this available can help with all of the above, even though some autistic people will never look at it. The ideal is probably to have a wealth of information available, but ensure that anything that absolutely must not be missed is brought out very clearly, as in a few bullet points. It is useful to provide things in easy read format. Check with autistic people about what they think would be helpful.

We may need to mentally prepare for new situations: who will be there, what will happen and when, what the space will look like, what is expected from us. Having this available can help with all of the above, even though some autistic people will never look at it. The ideal is probably to have a wealth of information available, but ensure that anything that absolutely must not be missed is brought out very clearly, as in a few bullet points. It is useful to provide things in easy read format. Check with autistic people about what they think would be helpful. Autistic people get tired. All those misunderstandings, uncertainties and sensory stressors can get exhausting. We might be bursting with energy when we are on a roll, but we often have to conserve our energy carefully at other times. We also tend to experience a lot of inertia, especially when tired, meaning we may have difficulty getting started, changing tracks, or stopping. Executive functions suffer when our resources run low. That can sometimes lead to us putting things off, or forgetting about them. Learn what it takes to work with the relevant autistic people: You might need to send reminders, give some space, or power on in the face of stuckness. Remember that they are probably not doing any of this to spite you.

All those misunderstandings, uncertainties and sensory stressors can get exhausting. We might be bursting with energy when we are on a roll, but we often have to conserve our energy carefully at other times. We also tend to experience a lot of inertia, especially when tired, meaning we may have difficulty getting started, changing tracks, or stopping. Executive functions suffer when our resources run low. That can sometimes lead to us putting things off, or forgetting about them. Learn what it takes to work with the relevant autistic people: You might need to send reminders, give some space, or power on in the face of stuckness. Remember that they are probably not doing any of this to spite you. Autistic people need processing time. Sometimes we need a while to digest information and follow up later. Please make this as easy as possible.

Sometimes we need a while to digest information and follow up later. Please make this as easy as possible. Autistic people are not daft. Presume competence. If you ask for our views on a project then disregard what we say, we will eventually find out. As many autistic people place a high value on truth, if you say one thing and do another then this will cause significant offence.

Presume competence. If you ask for our views on a project then disregard what we say, we will eventually find out. As many autistic people place a high value on truth, if you say one thing and do another then this will cause significant offence. Online participation. Some autistic people find it difficult to attend meetings, either because the setting is too overwhelming and stressful, or because they have other demands on their time and energy (e.g. caring responsibilities, employment). Provide opportunities for autistic people to contribute their ideas in their own time, from a place where they feel comfortable. This can also help you to reach a greater number of people, including those who struggle to attend meetings in town because they live in remote or rural locations.

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