In previous posts, I’ve criticized the “pathology paradigm” of autism.  I believe that there are a number of problems with this paradigm,¹ but I always find myself returning to one that I find especially glaring: when we describe autism as pathology, when we use the language of deficit and disorder, we’re very openly suggesting to autistic people – a marginalized population with high vulnerability to mental health challenges – that there is something fundamentally wrong with them.  Autistic people are deficient.

If our goal is to promote autistic people’s well-being and happiness, this is an unhelpful message.  Unfortunately, it is a message that we hear repeated over and over again.

This message directly affects autistic people’s mental health by encouraging self-criticism, but that’s not all.  I fear that it may also make autistic people more reluctant to seek out and utilize formal supports and services.  Who wants to hear about their own failings?²

We need to make sure that autistic people who seek out supports have a positive experience.  Autistic people who have a positive experience might be more likely to develop a rapport with specific professionals and clinicians, and they might be more likely to continue accessing supports and benefiting from them.  On the other hand, autistic people who have negative experiences may become demoralized and decide not to pursue formal supports in the future – and based on my own observations in the community, I believe that a number of autistic adults have begun to view traditional supports with bitterness.

The pathology paradigm, I think, makes it much more likely that our experiences of accessing supports will be negative.  Most obviously, we don’t want accessing supports to entail exposing oneself to pathological discourse.  In practice, many clinicians and professionals make some efforts in this direction.  Although scientific journal articles are often ridden with traditional pathological language, clinicians and professionals and support people in the real world often do speak in much more neutral and warm terms.  We don’t always see quite as much of the pathology language.  However, when our conception of autism is still so heavily based on the pathology paradigm, it’s virtually inevitable that something will leak through.

Furthermore, the pathology paradigm is essentially founded upon the idea of inequality.  Neurotypical people are fine and right, while autistic people have something wrong with them. We often seem to imply (or say openly) that simply being in the presence of neurotypicals will be inherently beneficial to an autistic person.  When neurotypical professionals take time to offer help to autistic people, I feel like there is some assumption that the autistic person should be grateful for this support, for this charity. On top of that, professionals and clinicians often have impressive educational qualifications that make them acknowledged experts, whereas their autistic clients may be marginalized in our society.  All this, I fear, may make it easy for dynamics of inequality to intrude between autistic people and their supporters.

In this situation of inequality, accessing supports can actually become a demoralizing and disempowering inexperience. One implicitly feels that one has failed, and because of this failure, one is reduced to coming before this expert as a petitioner for their assistance.

To be clear, I’m not saying that supports today are useless because every neurotypical working in the autism field has a “bad attitude”, or anything of the sort.  Some people actually make great efforts to listen to their autistic clients, and of course supports can be invaluable.  But there is no shortage of room for improvement. Some autistic people find dealing with supports to be a source of considerable stress, not support!

I often find it jarring to go from talking to autistic adults to talking to neurotypicals working in the autism field.  There is a wide gulf between the views one typically encounters in either group.  They disagree about many basic assumptions.  It’s almost like autistic people have a different culture, but sadly, not all neurotypicals in the field show sensitivity to this culture.

We also need to give autistic people more power in dealing with services and supports. Autistic people certainly shouldn’t feel like accessing services is an admission of inferiority, and nor should they have so little say in the type of support that is offered. Right now, we have an extremely inefficient way of allocating supports to individuals: we design some support program, like a social skills intervention, or extra time on college tests, and then people struggle to advocate to get access to it. However, it may very well be the case that some other support would be much better suited to an individual – they simply can’t access it because the service and support agencies haven’t created it. Thus, giving autistic people more say in their own supports would not only empower them, but it would ensure that the supports would be more relevant to the barriers and challenges they face.

I strongly believe that moving away from the assumptions of the pathology paradigm, and moving to create more of an equal relationship between client and provider, cannot help but make accessing services a more comfortable and rewarding experience for autistic people.  As I’ve written elsewhere, there’s no reason why moving towards a neurodiversity paradigm should force us to abandon useful interventions – even those that aim to change the person.  Thus, we should not lose anything that is truly necessary, and we would gain the ability to meet autistic people on an equal field using language that makes no claims of deficit or disorder.

Does this make sense?  Is it consistent with your own experiences of services, whether as a client or a provider?  Please do add comments.

Note: I would like to take this opportunity to acknowledge that the ideas I present here as my own are just thoughts I’ve drawn, tweaked, and synthesized from any number of sources (books, articles, conversations).  Even if I don’t always know where or how I got a particular idea, ideas are seldom if ever wholly original.  I do know that there are some people who have had an especially large influence on my thinking, and one is Joseph Sheppard from UVic.  I’m sure that many of the posts on this blog show signs of his influence.  I know with absolute certainty that he influenced this post, because I only decided to write it as a result of a conversation that we had!

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1. And I’m sure there are many more problems that I haven’t yet read about or thought of.
2. Now, I realize that this is hardly the only problem with today’s disability supports.  Apart from simple ineligibility for and/or nonexistence of supports, we also have the challenge of Byzantine bureaucracies that often make it extraordinarily difficult to obtain supports, especially for people with disabilities who may struggle with anxiety, or executive functions, or self-advocacy in general.  Another serious barrier can be encountering professionals who might not be aware of gaps in their own knowledge of autism, or who might be somewhat resistant to learning more from their clients.  These problems are also serious and need to be addressed.