Experts call for severe autism to be recognized as a separate diagnosis to ensure specific research
Kyiv • UNN
Experts are calling for severe autism to be recognized as a separate diagnosis to ensure proper care and research. This would allow for more precise allocation of public funds and the creation of specialized housing programs.
In the medical community of the USA and among human rights activists, the discussion about the necessity of introducing the term "profound autism" as an official diagnosis is intensifying. Experts emphasize that due to the excessive broadening of the concept of autism spectrum disorder (ASD), patients with the most severe forms of the disease are left without proper attention from scientists and social services. This is reported by AP, writes UNN.
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Judith Ursitti, President of the Profound Autism Alliance, states that the current healthcare system ignores the needs of the most vulnerable patients. According to her, the vast majority of clinical trials are focused on mild forms of autism, which makes it impossible to develop effective treatment protocols for people with cognitive impairments and lack of speech. This creates a shortage of medical personnel specifically trained to provide assistance at such a level of complexity.
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If you don't have research, you won't have treatment. You won't have accessible services and support. There are people with different spectrums who have high needs, but they are intermittent. The difference with our population is that they are constant
The impact of broad diagnostics and political context on statistics
According to Lancet Commission data, about a quarter of all diagnosed cases of autism fall into the "profound" category. However, due to better public awareness, the overall rate of ASD in the US has risen to 1 child in 31, which primarily includes mild cases.
The situation is complicated by the fact that against the backdrop of increased funding for research by the Trump administration, officials often promote scientifically unproven theories about the causes of the condition, which, according to experts, fuels misinformation and diverts resources from real patient care.
Characteristics of profound autism and the future of terminology
The term "profound autism," proposed in 2021, describes individuals with severe intellectual disability who are nonverbal or minimally verbal.
Distinguishing this group as a separate diagnosis will allow for more accurate allocation of public funds for social services and the creation of specialized housing programs. Currently, proponents of the initiative are preparing a petition to relevant agencies regarding the official adoption of this classification in US medical protocols.
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