The pathologization of interest and curiosity

As I am increasingly connected with people in Disabilities and Autistic communities, I am finding that there were things that in the past sat quite comfortably with me – that now – looking back – make me uncomfortable.

I sometimes feel like I would love to delete a whole bunch of posts, or at the very least reword them. I resist this, because I think it is important to be able to look back and be reminded of the shifts I have made. Almost invariably, those shifts have come from my friendships and connections with Autistic adults and from reading their work (which you can check out on my blog roll to the right ➜).

So ya… I am a work in progress…

One of the things that has been occupying my thoughts for the last while is the idea of intense interests or special interests. I have written about these before here and here and here.

I have stated that the potential for skill development embedded within a self-directed special-interest project is enormous.

I said:

When special interests are supported with opportunity…

…innovation, problem-solving, and positive development are inevitable!

                                               ~L. Kelley~

So… please… bear with me and I promise I will try to pull together the threads of my current thinking on this, because some of it has shifted.

It is important to support H’s interests and I believe that these are the foundational to so much of his development and also the satisfaction he finds in being who he is meant to be.

His interests renew him and soothe him and support his growth.

Deliberately and by design, we give H tonnes of time to spend exploring and pursuing his interests and to talk about them. We are interested and excited and share the excitement of his journey, and I find that I end up learning much about his current passions. Thus, I have an immense and detailed knowledge of things like Star Wars, Star Trek, retro pop culture, horror b films, and Zombies (to name but a few) that I might not otherwise have, and I am currently being schooled in Blacksmithing (and I am not being sarcastic).

H is at ease and is fueled by his interests, which is a part of the reason he is home-schooled, via a distance ed program. We believe it is important to protect his time and resources and to ensure he has the space and pace to delve into his interests and be as self-directed with these as possible. He is more communicative around his interests (as are we all) and his social interactions in the domains where these can be found (ie: skulking in a thrift shop) are relaxed and confident.

I also resist the tendency to formalize the teaching or training around his current interests, as this sort of meddling seems to squelch them. I want him to be at the helm. I would suspect that a typically developing non Autistic teen, who is showing an aptitude with building or making movies or learning to work with metal, might be enrolled in some sort of more formalized instruction. This is not useful at this time for H, though I’m not saying it wont be at some later point.

His learning seems to happen more organically – and holistically – through a total immersion in his current interest.

He is an inventor.

He is a blacksmith…

or a Jedi..

or a Hobbit…

absolutely and completely…

It is beautiful really.

Throughout his childhood, and as he is transitioning to adulthood, I have been unfaltering in my support of my son’s interests (even though at times I’m admittedly in quite over my head). However, it as I am considering this in the context of ableism, that it seems I may have missed something here… and it is dawning on me that this may be something big!

Screen shot 2014-08-25 at 7.09.06 PM

Image Description: Wooden fence with peeling paint frames a large speech bubble. Test reads: ” ‘I am wary of the ableism and ignorance that is present in the pathologization of interest and curiosity. When curiosity and adaptive learning are framed as perseveration or obsession, opportunities for development and fulfillment are inevitably lost.’ Leah Kelley – Thirty Days of Autism”

I have long considered that there is ableism and ignorance in the pathologization of interest and curiosity, when it is framed as perseveration or obsession, and I rejected this stance even before I could talk about it in such terms.

However, I am now seeing an aspect that I hadn’t considered. I am understanding with more depth that I must be wary of less obvious (to me at least) language that pathologizes strengths, such as curiosity and adaptive learning, by framing these in a way that potentially reinforces stigma.

So many times I have unquestioningly adopted language that is prevalent and commonly used to describe the interests of Autistic people – like my son – and I am now wondering if there are elements (once again) that I need to question as potentially disrespectful and problematic.

So here’s the thing… I am considering/reconsidering the use of the word ‘special’ when referring to interests, because I am wondering if that is dismissive and diminutive for this young man who is very rapidly approaching adulthood.

It feels uncomfortable to me… or perhaps more it makes me uneasy. Though I am not certain that term captures what I want to say, uneasy may be the best word I have at this time, though I would like a word that also layers in curiosity and a reluctance to come to a definitive conclusion. An uneasy wondering perhaps… because, if I would not describe the interests of non-Autistic person in such a way… then this is something I feel I need to question.

When I asked H how he felt about the use of the term special interest, he said: “I would rather it just be an interest. I don’t like the way people use the word ‘special’ in all sorts of ways to mean I am different. I think special is another way of saying you’re less than.”

Then before he went back to his current project he added, “That’s all I’ve got.”

Of course, this is personal; it is specific to our situation and reflective of my process and of my son’s response to my wondering. In a way, this is also a microcosm of something bigger: a glimpse into my own continuous journey of letting go and of supporting this wonderful young man on the next part of his development. I am willing to own this, but also want to clarify that I am by no means suggesting that the word ‘special‘ in relation to interest should not be quite comfortably used by others if that suits them. Neither am I suggesting that ‘special’ be added to a list of ableist language that has to be the same for everyone…  but in this context – for my son – and for me – this is clearly the case.

I will continue to support H’s development and the beauty of the intensity of his interests and curiosity that drives his self-directed learning, and to celebrate his explorations and his inventiveness, but I will no longer be referring to these as ‘special‘… at least not until we refer to everybody’s favourite topics, interests, or activities that way, and/or he indicates a shift in his own feelings about this.

I expect I will continue with my uneasy wonderings about things I haven’t closely examined when I have to opportunity to see from a different angle… because so often I discover something I’ve missed, and I have much to learn.

blacksmithjoy.jpg

“Blacksmith Joy” Image of H wearing jeans and a Don’t Get Bit zombie t-shirt in a garage strewn with projects and tools. He is holding a 3 lb cross peen hammer and is about to strike the blade of a metal broadsword that is he is holding with his other hand against a work bench. He is looking downward at the project with concentration and confidence.

Please check out this beautiful related post:
Self Care Looks Like “Special Interests”  By Michelle Sutton _________________________________________________

30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism (2015)

About Leah Kelley

Leah Kelley, MEd., Educator, Ed.D. Student, Parent, Activist, Speaker. Writes blog: 30 Days of Autism. Projects support social understanding & Neurodiversity paradigm. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in ableism, acceptance, Autism, Autistic, inventing, language, self-directed learning and tagged , , , , , , , , , , , , , . Bookmark the permalink.

26 Responses to The pathologization of interest and curiosity

  1. colinb897 says:

    I can relate to what you say Leah.

    My deep inner conception is “singularity”. Meaning individual persons who cannot readily be viewed and understood in terms of generality. I relate this to persons orientating to detail rather than “gist” (that much misused ‘mainstream’ term).
    Orientating to detail significantly translates to reliance on personal sense data, rather than on normative or conventional perception and interpretation. Relying on personal sense data tends to see cognition emerging from that being idiosyncratic (a term sometimes applied to the language usage of persons seen as autistic, but then too little is made of that observation).

    Being in a world trammeled and regulated by what is normative and conventional and generalised, produces existential difficulty for the individual person orientated to detail, personal sense, idiosyncratic cognition and singularity.
    Activity which takes the centre of that existentiality, and manages all from that centre, is then a boon. Singular self management is possible, although still potentially problematical when in interface with otherness and existentiality which is constituted across principles of convention, normality and generalisation.
    Creative, explorative, (personally and individually) adaptive, productive, ineluctably holistic, activity, then self-regulates (so as to make well-being possible) and self-realises (so as to make development possible).

    Interest and curiosity as you speak of them here, sees the singular person constantly refreshed by sense data, and by the enormity of what is sensed beyond personal sense data. Just as you are drawn to review and renew the speaking and thinking you rely on, just so is H drawn to this same engine of being.
    The blacksmith is a fine existential metaphor for how the singular individual can stand at the centre of this nexus of being, forge fine singular things, and at the end of such work be cheerfully happy with the being had.

    Liked by 1 person

  2. I agree with this 100%. As an autistic person and parent of an autistic person I have always been bothered by the use of the word ‘special’, especially in this context. Special needs, special interest, special comfort object, special chair, special way of communicating – all are diminished and made other this way. My biggest dislike is for ‘special education.’ Parents pass on to their children the belief that ASD kids are WASTING resources that THEY could be using. No wonder these kids are so bullied – if they are so special, other kids are NOT. Thanks for this post. I think you have shed light on a big problem inherent in the system.

    Liked by 1 person

  3. Patricia says:

    100% behind you on this. I had read the poem “The Language of Us and Them” by Mayer Shevin, and it really lays this issue out – http://www.autismspectrumexplained.com/our-blog/poem
    The interests are passionate, focused.

    I wonder if we NT’s are jealous on some level, of the deep feeling and intensity of concentration that autistic people can pour into their interests. It’s as if passion were a bad thing – as if “too much” love, joy, excitement, etc. were wrong. I know I grew up with this attitude around me as an NT kid. What is up with this?

    On a more personal note, I have a friend whose son IS blacksmithing – metal-working, making swords/chain-mail (it’s a niche ;). He’s 17 I think. If you’d like me to connect you, email me at autistikids@gmail.com and I’ll see what I can do. 🙂

    Like

  4. coyotetooth says:

    I know your hesitation with words. Confounded language Gathers stigmas as it rolls through the ages. I prefer “passion”, but answer to “obsession”, “interest”, “agony”, “fervor”, etc.

    I used to work with a young man agonising a “perversion.” Not all interests are positive or even neutral.

    Curious: would you say H is intp?

    Liked by 1 person

  5. chavisory says:

    I’ve never, ever liked the term “special interest” and I can’t fathom how someone came up with that as less pathologizing than “obsession.”

    I have obsessions. That’s what they are. I don’t see any need to apologize for or qualify them beyond that. Non-autistic people have *obsessions*, too. We may be more prone to them, but they’re not “special” just because a disabled person has them.

    Liked by 1 person

  6. emmavdk says:

    Like others above, I reject “special” – it’s condescending and othering. I do, however, continue (as some others above have also said) to like “obsessions”. Maybe this is because a very good friend of mine – Herb Lovett – once said to me “anything worth doing is worth doing obsessively”. 🙂 Another great post, Leah! ❤

    Liked by 1 person

    • Leah Kelley says:

      Thanks Emma ❤

      Actually – you are the second in this thread to share an appreciation of "obsession" – I like that ❤

      I am wondering if I am adding a layer of negative meaning to it through my expriences in the education system.

      hmmmm…

      Perhaps I am responding to the stance of negativity that I sometimes sence is coveyed in relation to the word "obsession" due to others' lack of understanding or acceptance or appreciation of intense interests, rather than the word itself. I am going to pay closer attention to that…

      Like

    • waggermama says:

      I have to add, in parts of the UK the word “special” IS used in a derogatory and ableist fashion.

      Like

  7. Scholastica says:

    I guess I don’t see how it is pathologizing–but I come from a profession where people routinely talk about and list on their resumes “special research interests,” so “special interests” looks normal and positive to me. However, I guess this is not the case in society at large. Does anyone have any idea how widespread the aversion to the phrase “special” interest is within the autistic community?

    Like

    • Leah Kelley says:

      That is a good question… but I have no idea. I can only reflect here upon my own experiences regarding my interactions with my son, H… and cannot speak for any experience other than ours.

      Like

  8. emmavdk says:

    I’ve always been proud of my obsessions…although my family has often wondered (but been bemusedly supportive). Of course, in the case of my sisters, they’re obsessive, too. lol. Kind of a badge of pride. Many stories to share. When we’re together again? ❤

    Liked by 1 person

  9. alexforshaw says:

    I like obsession: it evokes the time and effort dedicated to these activities. I’ve used the term “special interest” in the past because I picked it up through my reading, but I’m developing a preference for obsession. I’m starting to feel that the use of “special” as a modifier does carry ableist connotations as in the phrase “special needs” which, although neutral at its inception, is so often used in a disparaging way.

    I was very lucky growing up to have my obsessions with Lego, computers and programming supported by my parents — it was expensive — and I spent so many happy hours building models and programs. Obsession is certainly the right word: I still have days (at work now) where I spend 8 hours or more at the keyboard without even rising from my seat, unaware of insignificant distractions such as people around me or physical discomfort (thirst, pain from my static posture).

    Liked by 1 person

    • Leah Kelley says:

      I relate to what you are saying about the neutrality at inception of the term and suspect there is a similarity with the use of “special” in “Special Education.” Tricky where I live as the entire province and the Ministry of Education uses the term… I have no idea how to navigate that at this point. I think “Disability Services” or “Accommodation Services” might be a possibility – particularly if we get to a place where there is a broader understanding of the Social Model of Disability.

      I am appreciating people’s response to the word ‘obsession’… I can relate to this from another perspective ❤

      I can also picture 8 or 13 year old year lovingly focused on your Logo, models, or programming. I like that ❤ Thanks (((Alex)))

      Liked by 1 person

  10. Great post, Leah! I am in favor of getting rid of the use of “special” in many contexts. Right now I am reading Dr. Barry Prizant’s book Uniquely Human, and he favors the term “enthusiasms” for what most call “special interests.”

    Liked by 1 person

  11. ooo HE’S MAKING A SWORD?! THAT’S SO COOL!

    Like

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  15. I dislike the term “special”, I dislike “obsession” too, although, that’s what they are. But the word Obsession has a decidedly clinical insanity to it in my mind. I much prefer the word “geek”, because to me, that’s what I do. When I get into something, I geek on it. And I continue to geek on it until I’ve saturated the information and enjoyment I can get from it.

    Swordmaking never appealed to me, but I did make a point of learning how to make chainmail.

    Liked by 1 person

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  17. VisualVox says:

    Reblogged this on Under Your Radar and commented:
    Great, great post about something that’s been bothering me, too. I prefer saying something like “Intensely focused interests” or “areas of specialization”. Saying “Special Interests” feels infantilizing and dismissive to me – as though our expertise isn’t something that is really worth developing. But clearly this world needs specialists. Else we wouldn’t have many of the things we rely on every single day.

    Like

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