Thoughts on ‘European Autism Interventions – A Multicentre Study for Developing New Medications.’
European consortium strives to spur autism drug development
I certainly can't disagree with a statement made in the article from a researcher not involved in this large study that "forty million dollars a great catalyzer.” I would add, however, that with half of the amount coming from European Federation of Pharmaceutical Industry Associations, this clinical research project could likely be less than comprehensive while pursuing a more singular set of outcomes.
Another way to view this 38-million-dollar project is that it will further nurture the ongoing big money misdirection to authentic/best practice driven treatment, intervention, support and individual understanding of persons with autism and their families. That we first need to know each individual with ASD; their lives, family and world - one at a time - remains overlooked
That ASD is a remarkably heterogeneous disorder and far more likely representative of an umbrella category rather than a targeted genetic and/or neurological process is a first challenge to address before any attempt can be pursued to medically identify a unifying 'cause' of ASD.
That autism becomes integrated into the being; the individualism and strengths of so very many of those persons with this diagnosis also means that the continued presumption that there could be a 'unifying' drug treatment, a singular category for treatment; about any decontextualized treatment, for that matter, introduces a substantial flaw and challenge to such a project's internal validity...let alone any subsequently anticipated external validity.
The project's title, itself; 'European Autism Interventions – A Multicentre Study for Developing New Medications' indicates a massive unilateral endorsement of medication management in ASD along with pharmaceutical companies who are already far too deeply entrenched in the autism 'treatment' model.
Despite some ongoing and worthwhile clinical efforts and theory, we still don't have stable data as to a much more likely 'categorical' presentation of ASD.
We don't know the degree to which tiny sibs of those older with an ASD diagnosis who are, themselves, starting to exhibit ASD characteristics are the result of genetics, social replication of their older sib's behavioral patterns or a blend of both.
We've not taken seriously or addressed the profusion of so many pseudoscientific autism 'treatments' which, though being used endlessly in many places, never actually generate the related and hypothesized outcomes they've identified while, at the least, taking time away from what we know really can help and support and, at the most, being directly counterproductive.
And we've also still not more comprehensively studied the impact of demographics on purported autism prevalence and how the diagnosis is often given. It is these huge holes, among others, which need to be resolved before investing $38 mill towards the pursuit of a 'unifying' neurological theory and related drug treatment for those given an ASD diagnosis.
The use of highly targeted and carefully titrated medications blended with instructional/behavioral best practices across selected categories of autism may ultimately be found productive. But we still know far too little about both, the real time and long term impact of medication on ASD; on global processing disorders in general, even as prescriptions continue to be written.
Until the above identified, and so many other, connected areas of related clinical and social research are more consistently pursued first, such massive infusions of money towards a flawed pharmaceutical construct deeply concerns.
Autism is not a 'disease' and persons with autism are not 'diseased.’ Autism is also not a ‘mental health disorder’ but fundamentally developmental in nature. Though some persons with ASD will develop primary mental health disorders, these are not explicitly or presumptively co-morbid to ASD.
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Still more medication research and 'solutions' then only risk falsely blaming the person and those who care while distracting from what we know truly are best practices. Such medication research also routinely dismisses the person for a diagnosis. And 'animal testing' for ASD...as it is a remarkably heterogeneous disorder across humans...will only wind up doing little more than torturing animals.
Imagine, instead, what we could do with even a reasonable percentage of 38 million dollars focused on instructional, environmental and family support; jobs and transition services; school based supports for instructional differentiation, relevant adaptations and professional training; community development; future-centered person (and family) planning...debunking so many autism myths...since the diagnosis of 'autism' does not - should not - ever presume anything about a given individual.
Imagine, too, what we could do with a reasonable percentage of that money towards an authentic focus on the 'Hidden Crisis' of autism; that is, the so many children and families who very often and very suddenly realize that about nothing is available when the child ages out of the current plethora of earlier childhood services towards and into adulthood.
The need for real time transition service and supports; support for young adults with ASD whether they are moving towards college, jobs, increasing independence or other interests/preferences and personal need is where money and time also must be prioritized and spent. This current neglect of the dramatically growing numbers of young adults across the autism spectrum will not only continue to create a huge human and family toll with its loss of human competencies and unique strengths, but a financial/economic one as well.
Neurological research is a worthwhile and needed entity on behalf of those with ASD and their families but should not be presented as a primary, immediate or presumptive resolution to ASD-based needs and challenges. Such research also cannot continue it's effort to dissect the autism from the person as if autism was just another medical 'disease' since doing so starts off any such project with an inherent and deeply-seated flaw.