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This week we want YOUR feedback on a new paper in the Journal of Autism and Developmental Disorders which suggests that the reason there is so much discord in the autism community, is that people with autism are just too different, and have difficulties understanding each other’s perspective. Is this true? What do you think? Listen to the podcast and read the paper (link below) and tell us.
“the reason there is so much discord in the autism community, is that people with autism are just too different, and have difficulties understanding each other’s perspective.”
No, this is not the reason. The autistic community is indeed as diverse as the non-autistic community is. However, the autistic community has been labeled, researched and treated through interventions and paper-and-pencil scoring systems that are solely based on opinion.
There is in fact very little proper science in autism and even the science that has been done or claimed to be done is based on methods that are highly questionable and employed under very biased forms. There is no heterogeneity in the science of autism (no random sample). We do not know much about females or minorities in the US; we do not know much about the so-called low functioning end of the spectrum including folks with intellectual disabilities and living with pain and bodily sensation issues that lead to self-injury, among other awful things they undergo; we know near to nothing about adults in the spectrum, other than the high uncertainty about their ability to live independently upon the parents death or ailments due to advanced age, etc. and the awful consequences this is bound to bring to the adult person.
The science of autism has been hijacked by the politics and money-making of those who were supposed to help in the clinical arena. It is a shameful business that has divided people and pitied them against each other.
I am the PI and Director of the New Jersey Autism Center of Excellence and I am a scholar in my field of Neuroscience. I have worked on other fields where pathology of the nervous systems are treated under completely different models. Such models are aimed at helping and supporting the affected person, rather than highlighting the “deficits”.
I am appalled and horrified from what I have witnessed in the autism world; from what is being done to the children in the name of science; from what people that are profit from it so very well justify and rationalize when in fact any outsider see the utterly wrong approach to it.
There is absolutely no science behind any of it. Let me be very clear about this, as a scholar and applied mathematician working on complex computational problems for over 20 years: there is no science whatsoever behind the treatments and diagnoses in place in the world of autism.
It is a money making operation whereby people profit from the problem and have no interest whatsoever on solving the problems that benefit them at the expense of the autistic community.
The solution involves open science and the intervention of neutral observers with no conflicts of interest and proper technical skills and knowledge to reveal to the autistic community in a transparent way, how they are being played against each other, how they are being lied to and manipulated by a group that pretends to be “scientific” or claim “scientific evidence” about what they did to the children that are now adults and what they continue to do to the children of today.
By not respecting their most basic rights to autonomy and ultimately to the development and nurturing of independent living, the current autism diagnostics and treatments -done through trial and error and in the total absence of the scientific method- are condemning all of us in our society to deal with this discordance and maintain a level of discourse and a toxic narrative that avoids the critical point: the autistic individual is a human being just like any one else and as such, deserves utmost respect.
It is our moral obligation to retain and respect the person’s dignity, so that in so doing, we retain our own dignity.
Here is our biggest challenge in autism (in the words of Upton SInclair)
“It is difficult to get a man to understand something when his salary depends upon his not understanding it.”
To all those profiting from autism: stop it. Allow true science take its course so we get to the cause or causes on an individual basis, to help the person achieve the capacity for independent living, self-agency and ultimately, happiness.
We have the means to do this already, yet the obstacles rest in the politics and the profit making we scientists have to deal with in the clinical field of autism. I have by now the numbers to prove it and peer-reviewed papers and books that dissect the issues. And more is coming since my new position as PI of the center of excellence of the state with the highest incidence of autism has actually served as an eye opener on how money laundry and politics are done in day to day businesses. My new book due in 2023 “Autism Autonomy: In Search of our Human Dignity” will further detail the models that have promoted this mess, the numbers reflecting the net profit such models make and a serious proposal on how to disrupt and transform the system. I will make it open access to all through peer-reviewed system in other fields with no conflict of interest, so it is not vetted by those who so very much fear my work in autism. I am opening Pandora’s box. Good luck to those of you who made this mess in the first place.
As an autistic adult, I posit the following:
1) All people have trouble with perspective taking, not just autistic people. We are coming from very different neurological perspectives, so it’s difficult for EITHER SIDE to understand the other.
2) The reason that a cure is so repulsive to so many people is that autism is genetic and a part of identity. There’s no me without my autism. Discussion about “curing” autism in this way is baffling to me as I don’t see why society would want to lose the advantages of autism. HOWEVER, I think there is room for valid debate around whether some of the symptoms or characteristics of autism should be addressed. I suspect most people would agree that some should. If discussion would move away from trying to eradicate autism, then as autistic people we would be less likely to feel so threatened and could begin a productive discussion about what the most beneficial goals might be.