Pathologizing Autism? Let’s Discuss.

People argue that we have to pathologize autism because if we do not, families and Autistic people cannot obtain much needed services.  People say that it is one of those unfortunate things, but given the confines of our system, it’s the way it works.  People say that those who argue against the medical model for autism are not considering those who are more profoundly affected by their autism, those who require 24 hour care and assistance, people whose bodies cannot and do not do what their brains tell them, so much so that they cannot live without daily support.

I would love feedback and links from those who are Autistic favoring a shift away from pathologizing language and your reasons why.  I am particularly interested in hearing from those who are themselves, or who discuss people who are, in need of round the clock care.  If you have written about this, or have read anything about this, please send links.

Things people say, that I’d like thoughts on –

The medical model has its place and is needed to get services.

If we do not pathologize how will the people who require assistance receive it?

Any and all arguments and specific reasons why pathologizing autism is harmful.  Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?

What are the psychological repercussions of pathologizing autism?  Personal experience would be great!  (If you prefer to keep this confidential, email me at emmashopeblog@gmail.com.)  I will only share content from those who comment here or who tell me in private that I may do so.

A fantastic blog I refer to often and have reread countless times, is Nick Walker’s blog – Neurocosmopolitan, so no one need send me links to Nick’s work.  But for those of you who are unfamiliar with him, please, please read.  His blog is fairly new and has half a dozen posts, so it’s possible to read everything he’s posted in an hour or so, depending on how quickly you read.  I highly recommend doing so. (It took me a bit longer than an hour because I made notes along the way, as well as went to all the links he provided.)

DSM5

30 responses to “Pathologizing Autism? Let’s Discuss.

  1. thinking on it now. fascinating conundrum. thanks 24/7 b

  2. As someone who needs 24/7 care and assistance I want to say that, while I receive state funding and am generally disrespected by the bureaucrats, I am against pathologizing autism.

    Not pathologizing autism does not mean saying autism is not a developmental disability. Most services cover developmental disabilities, so there is not a loss of eligibility (I am talking about my state. It might be different in other states)

    To me pathologizing autism or not is linked to acceptance and inclusion, respect and embracing the social model of disability.

    The one case of service being denied I can think of, from listening to others, is insurance not paying for ABA. Since I am against ABA, I am fine with this

  3. Do we have a link somewhere to what pathologizing autism is exactly…I could make an educated guess just from the phrase itself. E needs round the clock care right now but then all 4yo do. Based on current path there is no doubt of his high intelligence but needing some degree of living help possibly up to 24/7 is very likely a future scenario so im interested to find out more and hear the responses.

  4. Duh Joy try reading the link first 😉 still interested to hear the results and viewpoints though

  5. My favorite philosopher, John O’Donohue, says that contradiction is the best seed for a human being to plant and nurture in their mind. A challenge, since Western thinking has systematically for thousands of years been in bed with non-contradiction. What would John say to the question, “Is autism good or bad? Do we want to cure autism? I know John would have a very deep laugh first. And in the background I can hear my half autistic, half neurotypical son, Noah saying, Is autism good Dad? I tell him, stretch one arm out to the right and one to the left. Pretend one arm is reaching into good, the other into bad. In the center where they intersect is the point of not good and not bad…that’s an amazing place to let your mind and heart hangout. Gandalf told Frodo he should keep Gollum alive–our enemy may have medicine for us in the end. Four and a half years we’ve been doing the Son-Rise Program. Our son is one of the happiest kids on the planet. At age four he was crippled with social anxiety. Tomorrow night we will both be at the renowned Starry Plough in Berkeley performing poetry independently. We will have a blast meeting new people, touching their hearts and souls with the poetry. Do I want to debate whether Noah is still a ‘pure’ autistic and has cured his social anxiety or whether his neurology has actually changed and he is less autistic, his brain infiltrated by alien neuro-typical neurology. Not really. We are too busy enjoying the hell out of life and the secret ingredients of the transformation have been patience, perseverance, the radical practice of joining in our Son’s autistic world so he feels totally accepted and we can learn about autism from inside it, and creating bridges that he can cross into our neurotypical world if he wants to.
    Son-Rise, Emma’s Hopebook–you both kick ass, we love you!
    p.s. MDMA is not a bad idea for parents of autistic kids, too (:

  6. I don’t think pathologizing autism is a good idea. I can work full time and such, but I suspect I need more support than I think I do. I can barely organize for myself. This has been a problem I’ve had forever.

    Heck, there’s a lot of people who are not autistic who need supports and such too. Why not go, here is what this person needs and give it to them in order to succeed? I don’t know why the main narrative is, oh, this poor autistic person needs 24/7 help. So give it to them! I think even non-verbal people with help can work and such, so why not give them the support they need? There are so many things that can be done.

    Like, someone like me can speak and such, but I still would do better working from home or having a quieter work environment. (my sensory issues are driving me up a tree.) I think we need to stop underestimating non-verbal autistics and stop overestimating verbal autistics such as myself who gets so worn out from the stress of sensory issues I get very sick on a weekly basis.

    But I still think a better approach is something individualized.

  7. The patholigizing argument only actually seems to have some kind of ‘legitimasy’ in a place where people want, and has a goverment that can afford to pay for services. But it seems to be a double edged sword, because the conditions for getting the support has to be met. The thing is this- the conditions are derived from misconceptions about why some autists need support. And it means that the true causal dynamics at play will never be discovered, because the ‘plan’ is to seem them as incompetent and take ( begrudgingly) care of them. But the being inside the malfunctioning body is still battling the distress, pain and other physiological concequences of being in an world that does not know how to actually take care of the body’s needs. The medical model will be most usefully applied, when people take note of what is happening at cellular level in our bodies- what electrolytes or amino acids need to be administered, how do we manage stress and stabalize the cells- what are the concequences of environmental stressors on the body, toxins in the foods- but those things are avoided, because in a world run by big corporate companies, those investigations will open Pandora’s box, and expose more than just the distress we have to live in, because if a world that is being fed plastic and wax with nutrition artificially added.

  8. Mmm, I don’t think it’s the pathologizing that’s the problem so much as the misdiagnosing that is the problem. If a person can not speak and therefore the dx is low IQ with no hope that speech can be understood, that’s a misdiagnosis. If the dx is inability to speak and the prescription is a letter board and computer and correct education, then the dx has been useful. If the person’s body does not do what the person’s mind wants it to do and the dx is willful disregard for instructions, then there is misdiagnosis. If the dx is body/mind disconnect and the prescription is to recognize and work with what is really going on, then perhaps a dx is helpful. I think the real problem is we have misunderstood what autism is. We have been dreadfully wrong. Thank goodness for those of you writing now to correct this.

  9. patricialebau

    Oh also I must add I think regular schools are exactly the worst milieu for many people, and especially autistic people. They are loud, have bad lighting, have fast transitions, have set ups for bullying (gym, hallways, before and after school, buses)…and often the teachers are impatient, overworked and catering to whichever students make it easiest for them to get the curriculum across efficiently. Classes are too big and chaotic. People with particular interests are forced to endure subjects they dislike or have no aptitude for while their actual strengths are ignored/stifled/wasted. Kids whose bodies are adapted to being outside running, jumping, playing-to-learn are stuffed into desks where they droop into a permanent forward fold. Then they are accused of being couch potatoes when they go home and consume TV and internet. Well we’ve just taught them to sit down shut up and absorb, so why the heck would they not go home and do what they have learned? Sheez. Anyway, schools are a bad place for autistic kids and many others who grow up and thank heaven to be out of there.

  10. patricialebau

    Ugh sorry the point being that some of the pathologizing comes from not fitting in in school. What’s the saying that just because you don’t fit into an insane society does not make you insane?

  11. I think it comes down to this: We can provide support services for a DISABILITY without pathologizing and seeking to remedy or cure a perceived DISEASE.

  12. As an Autistic AND a professional I think pathologizing Autism IS important. It’s not just about getting services. It’s about developing appropriate and effective services based on the pathology. When I taught special education I had Autistic kids, kids with ADHD, kids with emotional disturbance, etc… and many of them could present similarly on the outside. It was only the pathological internal processes that helped us differentiate, and subsequently provide the best intervention. A child with emotional disturbance might be acting out due to childhood trauma, while an Autistic might act out the same behaviors from sensory overload. So we need to distinguish Autistic process in order to effectively help them.

    • And just to clarify, “pathologizing” from a clinical perspective doesn’t always mean focusing on deficits. Sometimes the purpose of pathologizing is to fully understand the mechanisms of a variant to provide the best help possible. In that sense, I think it’s important.

  13. Marie Brennan

    Wow. I don’t know what to think yet. I’m looking at the websites and trying to figure out if the people writing these blogs can cross streets alone, or be left alone in their homes. I’m guessing that most of them can regulate their own bath water and cook themselves nutritious meals. I want Katrina to have respect and to feel accepted. At the same time it’s great to have people there when you need them. I never thought of autism as a pathology, but I do think of it as a developmental disability. It does make her life tougher I think. I’m for anything that makes her life happier and more self capable. I tend to avoid medications and go for natural solutions whenever possible. I try to help her be part of our community in as many ways as she wants to be. Whether you call autism a pathology or an alternate neurology it still has to be worked with and accommodated.

  14. My problem with pathologizing neurological differences is that the entire approach is based on deficits, on how an individual fails to match “normal” expectations. It is deeply rooted in the idea that those with the disability are deficient, broken, a burden. This is harmful to the person because it colors how others view them and creates a sense of low self-worth: this has been my personal experience, and closely mirrors the experiences of other disabled people I know with developmental and other disabilities.

  15. Psychopathology can be a difficult concept in defining at times. However, there is consensus that it does have to impair quality of life in some way (e.g. problems with multisensory integration, severe social anxiety, etc.). Ideally, diagnoses exist for two reasons:
    1. To easily and readily identify a specific symptom pattern.
    2. To provide needed services for those individuals.

    The rise in pathologizing has come more from justifying insurance reimburisment than a more social shift in the need to pathologize. Although psychopathology does exist and is prevalent, we have to keep in mind that a spectrum for each trait of behavior exists (e.g. Not everyone high on narcissism has narcissistic personality disorder). Thus, the purpose of pathologizing varies from patient to patient, with most reasons falling under insurance reimbursement to make treatment more affordable. In terms of a diagnostic guide, I prefer one that examines pathology and individual symptomatology over the DSM, such as the Psychodynamic Diagnostic Manual: http://www.amazon.com/gp/aw/d/0976775824?pc_redir=1402739006&robot_redir=1

  16. What I have learned from reading this blog is that Autism is not a pathology but rather a different neurology.

  17. Its a false logic really. There is nothing inherent to medical model understandings of Autism that enables support. Just the opposite really Its well documented that social model understandings enable supports that are far more useful to autistic people. I see no value in pathologizing Autism except to the industry that has been built up trying to take advantage of parents of Autistic kids.

  18. Pingback: An Argument Against Pathologizing Autism – What Others Had to Say | Emma's Hope Book

  19. Reblogged this on bunnyhopscotch and commented:
    This is a very important discussion, and I am reposting it here, albeit belatedly. (Brain meltdown – I have been battling with my humanity, neurology and pathology – hit by the cough-cold viral bug, which has in turn triggered a nasty autoimmune flare.) Please read the follow up post too.

    So much in Emma’s Hope Book resonates with my own raison d’être. I began Bunnyhopscotch because I wanted an agency through which to present personal and intimate perspectives from lived-autism, aspects of my humanity, rather than pathology, and empathic ‘space’ wherein we can all, regardless of neurological cultures, may share commonality. The current attitude prevalent in the research and practice of neuroscience is geared towards ‘disease finding’ – pathology – and it is now becoming more and more obvious that this approach is unsuitable for neurological cultural study, which should be focused on the human experience rather than being associated with pernicious diseases.

  20. I haven’t read all the entries. The problem is what is pathologised. Autism seems to be an unknown entity. If the professionals focus on the root causes, and from medical perspective try to help people on the spectrum work with their challenges by ( I repeat myself) focusing on root causes, and if the professionals would focus on helping the people with autism NOT the people around them, we would possibly be on the right track. But if the professionals are focused on behavioural appearances, it is like pathologising “scratching” because person feels an itch instead of dealing with the reasons of the itch.

  21. As a Learning Support Teacher, my goal is always to build understanding. I usually work with jus with Asperger’s or higher functioning autism. To me the diagnosis is a lens through which to see and understand the patterns of behaviour associated with autism, not as a matter of “what is wrong” but just as a matter as here’s why and here’s how we recognize and build on strengths and recognize areas of concern. So often I work with kids who recognize they are different and know they struggle with things that others don’t. Explaining to them why that is AND helping them see their gifts as well as their struggles helps build self knowledge and acceptance and is a great starting point.

  22. Pingback: Markierungen 09/09/2014 - Snippets

  23. The people who list issues of severe incapacity along with autism are confusing the autism with comorbid issues. A huge flaw in how autism is addressed is that once someone is labeled with it, many people are quick to lump every challenge in that person’s life under the autism umbrella, even though it might be that the person is autistic AND has CAPD, or intellectual disability, or CP, or whatever. With that in mind: Autism, even “mildly,” does cause disabling situations because of OTHER people’s reactions to the natural perspectives, perceptions, and behaviors of the person with autism – but the label is only needed because those whose perspectives, perceptions, and behaviors fit the majority norm become hostile to those who don’t fit. THEY don’t “feel” loved by children who clearly do love them but don’t show it in a “normal” way; THEY get upset by a coworker focused on the work task instead of pleasing body language and small-talk reciprocity. That rejection creates barriers more reminiscent of race or ethnicity prejudice, but at an even deeper reflex level combined with societal expectations that all behavior is a matter of willpower and the false idea that all people perceive, feel, and interpret things the same way. Until that perception changes, the LABEL that recognizes that it is not willpower but wiring among ALL concerned, that label is needed to provide protections, accommodations, and etc. In addition, it answers the question of “why” for the person with autism, too, so that the anxieties caused by living in a bath of social rejection can be addressed with understanding and successful strategies.

  24. Reblogged this on Under Your Radar and commented:
    Well worth considering – and really re-considering the pathology approach. Personally, I’m not a fan, tho’ I do see how it can be useful.

  25. Hmmm. I’ve heard people use “pathologize” of course, but it’s an odd and interesting term. It appears to be typically used to reference the process of treating something “normal” or even healthy as abnormal or diseased. In that context, it’s hard to disagree with the rejection of such a process.

    But it’s not what the DSM and other tools of psychopathology are attempting to accomplish and framing the discussion in those terms has the feel of constructing a straw man and fighting against. I think there are two distinct and largely separate issues that are being conflated.

    One is the process of identifying and defining neurological differences. And I think it’s difficult to argue that process isn’t important.As a 51 year old adult who was just recently diagnosed, I can say it was very important to me — independent of any need for “services”. Even though I suppose I’ve been “successful” by most measures, it’s been incredibly hard at times and a constant struggle on a daily basis, especially since I had no idea why. One can quibble over whether or not it should be labeled a ‘disorder’ (as in autism spectrum disorder) or a different term used, but a way to identify autism is important. Obviously, the existing criteria aren’t perfect, though they are an improvement over DSM-III and DSM-IV. We should continue to improve them.

    The other is a social process where autistic people (and others with differences, whether formally identified or not) are treated poorly by others in society either deliberately or accidentally through ignorance. That is a real problem, but it’s largely independent from the diagnostic identification process. I’m 51 years old. People didn’t start abusing me, taking advantage of me, or treating me poorly a few months ago when I was formally diagnosed. I’ve lived with that my entire life. You could remove ASD from the DSM entirely and it would not have any impact on that reality. It would leave people like me with no means of identifying the reason, finding community, or identifying appropriate help. There is certainly a problem in the way autistic people and others who are ‘different’ are treated. Changing the label won’t do anything to really address that problem, though.

    Because etymology always fascinates me, I was curious where “pathologize” as a verb originated. It appears to have been coined by James Hillman in the 1970s in his book Re-Inventing Psychology. (The Internet is a wonderful thing for people like me who like to track things down.) I haven’t read the book, though I do remember the 70s quite well and read a fair amount of Jung back then. (Hillman is apparently “post-Jungian” whatever that means.) Here’s his definition for the term when he coined it.

    “I am introducing the term pathologizing to mean the psyche’s autonomous ability to create illness, morbidity, disorder, abnormality, and suffering in any aspect of its behavior and to experience and imagine life through this deformed and afflicted perspective.”

    In Hillman’s thesis, pathologizing is not “secondary or extraneous”. It’s not something done to us or externally imposed. Rather it’s “primary and inherent”. He describes it as “a fundament, a strand in all our being, woven into every complex.” I haven’t read the full book, so can’t really say if I agree or disagree based on a few quotes, but it is an interesting point.

    I think I’ve rambled more than enough. I did want to share one article I’ve been reading that makes a good point about the DSM. It’s a complex document trying to meet diverse considerations. And one of those is a record-keeping function to facilitate third party payment. That’s really separate from both research and considerations about providing care or assistance, but it is still an important facet. Since it’s trying to meet diverse needs, though, the DSM is always going to end up being a volume of compromises between the various considerations.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2288576/

    I’m still in the process of reading it, but the part I have read seems helpful.

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