Assessing Autism Organisations

A question that people seem to ask a lot is “Is this a good autism organisation?” This seems to happen after after realising that some autism organisations are problematic. This post is not going to mention any specific organisation. Rather, I intend to outline some of the things that I consider to figure out whether an autism organisation is problematic.

Most organisations generally claim to want to help autistic people, or their families. At the surface level, they may look like great organisations, but when you start looking at the way these organisations work, it’s easy to see that their intentions may be less than good. So, here are the five things that I consider.

1. Guiding Paradigm

This really is the key question because all other considerations relate to this question.

I follow the neurodiversity paradigm. This means that I don’t believe that any neurotype is disordered/diseased. It doesn’t mean that I believe that Autistic people don’t face challenges or never experience any struggles. We definitely do, but I don’t believe that the struggles we experience are because we’re Autistic. We struggle because greater society doesn’t accommodate the way our brains work.

Unfortunately, many autism organisations adhere to the pathology paradigm. If you want to find out more about autism and the pathology paradigm, read this post by Nick Walker. When an autism organisation is entrenched within the pathology paradigm, it approaches autism as a thing that needs fixing. If people think that I am broken and in need of fixing, then I’m less inclined to believe that they really want to help me.

You can’t fix something that is integral to who we are. Of course, that doesn’t mean that we don’t need support or even therapy. It just means that any support or therapy offered must respect that we are autistic and that we will always be autistic. Learning different coping mechanisms or achieving certain skills doesn’t make us any less autistic.

2. Autistic Representation

Autistic people have a wide range of skills. Some of us can hold positions in higher management, while some of us cannot. We may need certain accommodations, but the effort of accommodating us is worthwhile because we offer a perspective that no non-autistic person can offer. We know what it’s like to be autistic. If autistic people aren’t involved at all levels within an organisation, how can they possibly understand what we want or need? If an autism organisation won’t accommodate autistic employees within their organisation, then how can they claim that they want to empower us?

Hiring a few autistic people into senior management as tokens well after an organisation has been running for several years doesn’t address the lack of autistic representation. Hiring a couple of autistic people, and pretending that is inclusion is not real inclusion. It’s merely for show. This is often done to avoid and/or silence criticism from autistic people.

To illustrate what I mean, I’m going to use a hypothetical organisation unrelated to autism. Let’s say that an organisation forms with the aim of uplifting women. This organisation is run solely by men for several years. Then, women start criticising the lack of representation within the organisation whose purpose, they say, is to help women. The organisation, which by now has a workforce consisting of 1,000 men, then hires one or two women. Can they then claim that they’ve addressed the lack of representation? Would you believe them? I wouldn’t. So I don’t believe autism organisations who wheel out two or three autistic people either.

3. Voices Preferenced

Many autism organisations tend to frequently quote non-autistic “experts”. Some autism organisations share stories, but all the stories are told by non-autistic family members. They may hold conferences where their headline speakers are non-autistic while autistic speakers get relegated to a side stage. Those non-autistic speakers often receive speaker’s fees while autistic speakers do not. Exposure doesn’t pay anyone’s bills, yet time and time again, exposure while being a sideshow is the only thing on offer.

More blatantly dangerous, some organisations arrange exhibitions where they allow woo peddlers with a focus on curing autism to exhibit alongside non-autistic “experts” and autistic people.

Often when confronted about these issues, these organisations claim that they want to present a balanced perspective. Can you consider what that balance would look like? One side wants to focus on us as a tragedy, or as a problem to fix. The other side, autistic people, would like other people to stop thinking that our existence is a tragedy so that we can discuss the problems we face. How can you strike a balance between those two perspectives?

4. Intersectionality

This is a problem with many organisations – even ones in which I’ve been involved. If an organisation is run and staffed by only one demographic, is it truly representative of autistic people?

Of course, there may be some organisations that will have a primary focus on a specific group of autistic people. That’s ok. That’s necessary because certain groups do have specific needs. If that’s the case, the organisation still needs to ensure that by focusing on one particular group, they’re not contributing to the oppression of another. We cannot liberate one group by oppressing another.

Organisations that aim to help us have to focus on fighting for our human rights. Many of the problems we experience are because we do not have equal human rights. As an example, many people don’t see us as a group that deserves the basic rights to autonomy, dignity and self-determination. They see us as less than fully human. Autistic rights are human rights, so all human rights movements must be intersectional to ensure that no one gets left behind.

5. Primary Focus

This one fascinates me. Many autism organisations claim to support “people with autism and their families”. But, when you look at what they really do, it’s easy to see that they focus on the families of autistic children. More specifically, many autism organisations focus on the non-autistic parents of autistic children. Non-autistic parents of autistic children may need support, but that support should not cost autistic children’s dignity. The overwhelming narrative of these organisations often is one of tragedy. We become props in fundraising campaigns where people hear that we are something to fear.

These autism organisations seem counterproductive really. They supposedly support parents, but their dominant message is that parents have lost the chance at a “normal” life. How is that in any way supportive? When you keep hearing that your life is terrible and your children are burdens, it can be hard not to internalise that message. It can become harder to believe that different can still be good.

Many organisations have the sole purpose of raising autism awareness. Raising awareness really does seem to be a circular business model. They raise funds to raise awareness to raise funds to raise more awareness to raise more funds… We don’t want your awareness. Most of the time, these awareness raising organisations don’t use any of the funds for anything other than raising more awareness and/or paying the people who work for them.

If the organisation does in fact focus on autistic people, do they do so in a way that respects us as people? Are their marketing campaigns dominated by the tragedy narrative? Unfortunately, most autism organisations do seem to be about us without us. We’re constantly seeing people talk about us without even considering including us in those conversations.

Alternate Options

If you use those five things to assess an autism organisation, you’ll probably find that most autism organisations are pretty rubbish.

There are other options. Look for organisations run by autistic people. Some of these may be formally registered organisations, while others may be informal groups of autistic people working together to help other autistic people. Look for organisations that focus on effecting social change rather than fixing autism. Most of them will be smaller because most of them receive little to no funding. The majority of funding goes to autism organisations run by non-autistic people who portray autism as a problem to be solved. Ask yourself why that is. Consider what that tells us as autistic people.

If you think I’ve left something out, or I haven’t explained something well enough, please let me know in the comments.