Tag Archives: medical model

An Argument Against Pathologizing Autism – What Others Had to Say

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

From: ukdisabilityhistorymonth.com

 

Autism is Not Like Cancer

I’m traveling and haven’t had time to blog.  But a couple of comments came in on the last post about How We Discuss Our Children that made me think a bit more about all of this.

When my daughter was first diagnosed we were told a great many things that frightened us as well as some things that were very encouraging, but when those, seemingly “good” things did not come to pass, we became even more frightened. In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child?  Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”.  All of this was done with good intentions, lots of well-meaning advice, but all of it came from non autistic people who were operating under the assumption that our neurology was the gold standard and one that everyone should aspire to, as if that were possible.

Autism was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, and have witnessed what chemotherapy does to a person, both when it works and does not, this was particularly awful as I took it literally and began to see any and all “treatments” as a kind of “chemotherapy”.  I even consoled myself with the idea that this “risky” treatment would all be worth it, if it “saved my child’s life”.  I spoke of it in this way and thought of autism as “life threatening” because I could not imagine a life without language, friendships, empathy, etc and this was what we were being told autism was.  This is an incredibly dangerous idea for any of us to engage in and is why I find it incredibly unethical for organizations and public figures to talk about autism and Autistic people in this way.

Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools and the general anxieties that come with parenting on too little sleep and too much caffeine, along with a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression, anxiety and upset.  Particularly when it becomes increasingly clear that there is little available that will actually prove helpful to our kids.

Think of how different it would be if our pediatrician was a non-speaking Autistic person and our non autistic older child had a couple of Autistic teachers and another kid’s parent was Autistic and one of our closest friends happened to be Autistic and Autistic kids were not segregated out of schools and work places accommodated their neurology and made it easier for Autistic people to be among us.  Part of that initial fear we parents often have is because we have never met anyone who is Autistic.  All the information we then receive is taken as fact and not questioned immediately.

So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model and because of the way we have segregated those who are Autistic. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns the – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it, is increasing everyone’s pain and suffering, including our children’s.

Internalizing What Others Believe

When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic.  It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false.  It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t.  These kinds of internalized beliefs about ourselves begin young.  I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.

With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject.  When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact.  If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving.  If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.

Society has adopted the medical model for autism.  It is a neurology seen as deficient when compared to non autistic neurology.  It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful.  Things like OT and PT, and  in some cases, speech therapy etc would all be deemed unnecessary.  But I have to wonder whether there isn’t a better way.  After all the cost our children and the Autistic population is having to pay is pretty steep.  Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.

Many talk about how autistic children are trapped and imprisoned by their autism.  A few Autistic people have written about how they lived in their own world until they were given the support to communicate.  Some have even said they felt imprisoned and trapped by their autism.  The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding.  When I read things like that, written by Autistics, it is painful to read.  Understandable, but painful.  The internalized view of themselves as imprisoned by autism is what others and society has said.  But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear.  For a long time I bought into these beliefs, too.  But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.

Em’s new guitar

Guitar copy