In yesterday’s blog post I asked for thoughts regarding the pathologizing language that dominates most conversations about autism and those who are Autistic. I received some terrific responses both here, through email and on Emma’s Hope Book Facebook page. I also asked Emma for her thoughts, which she very patiently gave me and generously said I could post here.
Emma wrote, “Deciding autism is a medical condition eases the minds of those who profit from it.”
A couple of great links were sent to things that have been written on the topic or related topics. This, from the Zur Institute entitled: DSM: Diagnosing for Status and Money, focusses on the DSM and argues, “Historically, many clinicians have been unaware that the DSM is more political than scientific, that there is little agreement among professionals regarding the meaning of vaguely defined terms, and that it includes only scant empirical data.”
Another link sent was this one, Time to let go of the medical model by Jarrod Marrinon, which does not speak specifically about autism, but is certainly still relevant.
And this link from Nick Walker’s blog, Five Steps Toward Autism Acceptance is terrific with the first step being, “De-pathologize autism and Autistic people. This, in particular, stood out, “Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations.”
Nick’s words were similar to what Emma wrote when I asked, “What do you say to people who need support and assistance in their daily life?”
“Why should they have to fight anyone to receive the help they need to live?”
I said, “Well, in an ideal world they wouldn’t need to, but some say that there is only so much money and available resources, so people need to prove that they need the help more than others. In effect they are being forced to compete for the money that’s been allocated.
Emma wrote, “This sounds like an excuse so that people who do not need help can feel better about how others are treated.”
David wrote, “The obsession with behavior as the be-all-end-all of autism “science” and “treatment” is a superficial distraction and a formula for spectacular failure in addressing the underlying realities – both impairments and abilities alike – which Autistics experience and must cope with every minute of every day. The temptation to pathologize and treat behavior for its own sake is dangerously misleading and utterly beside the point. That boilerplate approach to autism HAS GOT TO GO.”
Toddynho wrote, “why pathologizing autism is harmful”
Compare and contrast the life experiences of LGBT people in contexts where homosexuality is pathologized and in contexts where it is not.
“Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?”
To me, it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.
“If we do not pathologize autism how will the people who require assistance receive it?”
On a massive, massive scale, the adult autistics who require assistance are either receiving no assistance whatsoever, or the meager assistance being received is grossly inadequate if not downright harmful.”
Toddynho goes on to say, “What we have is a society that is pervasively pathological. Addressing the most acute societal pathologies will improve things for autistic people broadly much more and much faster than any kind of autism-specific “assistance” strategies ever will — and moreover will make things a lot better for most non-autistic people too.”
Gregg wrote, “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.”
I believe the medical model, which is the model used in almost every university and by most autism professionals does tremendous damage to the very people they are intent on “helping”. To repeat what Toddynho wrote, “…it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.”
“Do you think pathologizing language is harmful?” I asked Emma.
Emma wrote, “Justifying decisions to ignore those who need help is not reason to make people feel ashamed of their existence. People need encouragement to do good. There will always be some who cannot, but this is not a good reason for everyone else to stop helping each other.”
From: ukdisabilityhistorymonth.com
Emma's Hope Book 
wow genius statement “Deciding autism is a medical condition eases the minds of those who profit from it.” Brillant Emma ❤
Yeah, I loved that too!
Ok. First of all, I love Emma’s comment. To broaden it a little, I strongly feel that it isn’t just autism we’re talking about. Healthcare should NOT be a “for profit” industry. But the quicker doctors can slap a label on you, put you on meds, etc – the quicker the government makes money off you. (I also incidentally think that the food we eat is a big reason why as Americans we’re so sick – but that’s another comment altogether!)
But back to the world and the way things really work. My daughter has Rett Syndrome and is severely autistic. I have no problems with these labels because it’s what gets her the services she needs. She needed her scoliosis label to get her spine surgery. She needed her “violent behavior” label to get sent to the school she needs. To me, they are just words – a means to an end. They do not define her. To those of us who love her, she’s just our beautiful Risa.
I see your point and I don’t disagree. But what you’re trying to do is change how the entire medical community operates. I love that you think that way, Z, I truly do. If anyone can change the world, it’s you! 🙂
Yup, that’s what I’m trying to do. Me and a whole bunch of other people! Love to you and yours Ang
It would be a start in the right direction if autism could be removed from the DSM and inserted in the IMC in a proper fashion so as it being a condition similar to the way blindness is a condition that can be diagnosed, resulting in a person getting the support they need to live their lives.
Being a treating therapist, I am conflicted between the DSM and the symptom based model, which in this case is broken down into the Medical Model and the Social Model. Emma’s Hope Book is an excellent example of how to celebrate strengths and develop an amazing dialogue. My main belief guiding treatment is that I would like to help each person become more of themselves rather than less of a disorder, which results in more positivity, encouraging success rather than avoiding failure. In my work, I blend both ways of thinking together as much as possible. For Social Model Thinking, I strongly support each of the suggestions in the column beneath it. I prefer to elicit the families strengths to treat autism, a condition that has affected one of the family members, whether it be to a child or adult. Most of the time, when we are able to outline our strengths and emphasize how we can be more of ourselves, we achieve success. However, regarding the Medical Model, I have found the DSM very helpful when families need to know whether there really is something that is different or whether the symptoms are within the range of healthy development. This is where the researchers and treatment guidelines are most helpful. The DSM-5 is not great by any means, although it was based on hundreds of professionals work studying tens of thousands of people. I use it when it works well and don’t use it if I do not have to. Without a clear grouping of symptoms though, it would be very difficult for treatment methods to be validated. We would use anecdotal cases to guide treatment. Which may be less effective. In this manner, the Medical Model is the social model since the experts all discuss many cases and decide what symptoms categorize a diagnosis and which symptoms are just associated (correlated) with the diagnosis. The other benefit of a DSM diagnosis is when a parent who may not be as on board for treatment understands that their child has Autism and that their child needs help now, such as early intervention or further assessments; they are then convinced to seek treatment. This is a very watered down version of my perspective. I welcome comments and suggestions 🙂
Hi Michael, thank you so much for your comment. I urge you to read Nick Walker’s “What is Autism?” http://neurocosmopolitanism.com/what-is-autism/
Adding to what Nick has written is to emphasize that the current description of Autism and what it means including it’s “symptoms” is filled with inaccurate information that then causes people to treat something that is actually incorrect. If one just looks at so called “behaviors” to begin with, things that non autistic people believe are communicating one thing, only to have more and more Autsitic people telling us that the meaning attributed are so often wrong.
For example, a child does not make eye contact during a lesson about a boy going to the airport to visit his grandmother and when asked what form of transportation he will take to see his grandmother, the child’s spoken answer is, “Uncle Chris was all alone.” It is then assumed the child did not understand the lesson or wasn’t paying attention. Except that if this same child is given the means to write and was handed a letter board they then might write, “He will take an airplane.” That same child might then write, “It is boring to do the same thing over and over all the time. I want to learn both syntax and style of diverse writers. Poetry and prose both interest me. I love to write stories and welcome the opportunity to do so.”
I have conflated a couple of actual events that took place at two different times with my own daughter, but the point is, and it is one that is being made by many Autistic people, particularly those who are deemed “non-speaking” or labeled “severe” and “low functioning” that what is routinely thought to be true by non autistic “experts” is in fact, not true.
Another example of this is how my daughter has been routinely viewed as incapable, put into special education schools where she was taught curriculum more suited for those in kindergarten or, if she was lucky, first grade. This link is for a lesson we did on William Blake’s poem, “The Tyger. https://emmashopebook.com/2014/05/20/emmas-take-on-the-tyger/
Interestingly, Emma is not alone, and is one of a growing number of kids who are proving that the way they appear to most people is not in keeping with what they are capable of and are.
Thank you for pointing me in the direction of Nick Walker’s description. It was the most accurate definition of social interaction differences that I have read: ”
The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.”
Also,
I have seen similar situations where kids intentions have been misinterpreted and labeled as deficient, such as the example that you gave of your daughter. I am impressed by her interpretation of William Blake as well. I first read his Songs of Innocence and Experience and was not able to have as much insight as she had. I do believe that Asperger’s is a personality difference rather than a disorder and you are convincing me to think of Autism in that same light.
Michael
I would suggest that autism is a disability, but the way our culture and society views disability is so stigmatized and with so much prejudice heaped on, it becomes a word loaded down with all kinds of other things that have nothing to do with it. My daughter cannot use spoken language to converse the way we do, or as she has phrased it, “you, talkers”. As we live in a world dominated by talkers she is at a disadvantage. But if none of us relied on spoken language to communicate, she would not be at a disadvantage. I think the way we think of disability has to change, hell, the entire way we think about human beings and all neurology has to change!
It’s nice to meet you, Michael… 🙂
I teach children with autism, and I always say “children with autism” , I never say I teach autistic children because to me they are children first, and autism is a diagnosis they have. Also I describe cognitively typical children as “cognitively typical children ” because I do not use the word normal and all that implies. Words matter because the reflect how you think.
Hi Lisa,
I’ve written about this before, (as have a great many others) but it might interest you to know that a great many Autistic people much prefer being referred to as “Autistic”. https://emmashopebook.com/2013/06/27/person-first-language/ Within the post I’m linking to, are numerous Autistic people who have written against person first language and their reasons why. And for the record, my daughter has asked to be referred to as “autistic”, she then added “and proud of it.”
So are the cognitively typical children not children first?
Reblogged this on Spectrum Perspectives and commented:
An important read – this quote (among others) resonated with me: “Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations.”
Exactly!
Autistic people don’t need to be pathologized, they need to be empowered to live full and independent lives
Dear AZ, this is an important discussion. I am giving the above chart to all the practitioners in our practice and posting the chart in our office. It will help our well meaning group who were all trained in the medical model be more mindful of language in assessments, session notes, discussions, and media events. But perhaps most importantly, it should help facilitate more outcome based programing. Thank you.
We are all learning and (hopefully) rethinking as we do. Glad to continue the discussion and thank you for being willing to have it.
I am late getting in here, but this is a really important subject, thanks, Ariane, for raising it. I am against pathologising. On top of that, I agree with Ariane that there needs to be a major attitudinal change, a shift in paradigm, in the research and practice of pathology / medicine / diagnostics for neurological functional differences such as autism, and one which will create a new cultural language which is more centred on the person rather than the perceived ‘disease.’ By the way, many clinicians and psychiatrists I know and have spoken with have problems with the DSM, but it is a huge monstrous system to shake.
“A huge monstrous system to shake” and that would also describe the current thinking about autism in general. It is everywhere and ingrained in not just the medical community, but in education as well… It’s a “gut-job” to use construction terminology!
Absolutely! And we – across neurological cultures, across professional practices – need each other to help move towards this change. When I began researching my own neurological condition, I accepted the pathology-pedagogy wholesale because that was what I was fed. But I slowly began to see too many problems in the approaches. I began to resent the labels of ‘high’ and ‘low’ functioning autism, because in my actual day-to-day experience, being labeled ‘high’ functioning means little to me, the lines are blurred in reality and the pathological approach chokes me – literally. The other thing that constricts is the too erroneous but prevalent “Us vs Them” attitude among many ‘Aspies’ – this in my opinion stems from over pathologising too. We need everyone, the Neuroscomopolitanism described by Ralph Savarese and others – to create real change. Thank you, Emma, Ariane and Richard, for being part of this push for change. We cannot do it on our own.
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A small, yet sturdy group of clinicians from different disciplines have been using strength and relationship based approaches in supporting and treating autistic individuals for decades. We believe that that learning differences need to be understood, respected and direct the context of treatment. Strength based approaches emanated from the field of mental health and as such are not yet integrated into treatment models that are more medically and pathology based, including most education systems and strict behavioral approaches. The good news is that we do not have to wait on the DSM to incorporate this knowledge. A most excellent example of a network of clinicians working towards a strength and relationship based paradigm shift to support parents and professionals across the world is the Profectum Foundation. This foundation supports the movement away from pathology and towards respecting individual differences and the presumption of competence in autism treatment and support.
Here is a visual of best practice guidelines with respect and relationships at the core. http://www.profectum.org/site/c.8gLNK0MFLkIYF/b.7930813/k.5CEE/Best_Practice_Guidelines.htm
As a Pediatric COTA and the mother of my own son with Autism, I agree with this wholeheartedly. But I need help. Tell me what this will look like, treating socially vs. medically? For me understanding the line between acceptance and providing therapies and treatment is difficult to navigate.
I love Emma’s blog, she and you are amazing. Thank you for sharing all that you share here.
I did this 20 min documentary about pathologizing autism, Nick walker is in it! I wanted to share it with you.
https://vimeo.com/m/95222930
Sincerely,
Shari Paladino
Hi Shari! I saw and shared it. Thanks for the link and it’s nice to meet you!
Great blog and lots of additional articles to read.
This post continues to generate such great comments, Ariane and Emma!
So many professionals and educators are still on the learning curve about what autism really is. IN the meantime, treatment models based on less sophisticated understanding of the complicated processing in ASD predominate. One point I try to make when I train is that we need to view behaviors in ASD as adaptations, ways individuals cope with the differences (neurodiversity) in their neural wiring. If disciplines worked together to truly understand what we now know about ASD from a neurodevelopmental perspective, everyone would benefit.
As a professional, I have witnessed too much suffering as a result of the misinterpretation of symptoms and behaviors at face value in ASD, and try to bring the more complex understanding to whomever will listen. Conversations like these leave me hopeful, as you all lead the way!
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