2018 ISAR presenter calls for focus on the severely affected

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Spyoon
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16 May 2018, 8:14 am

https://www.spectrumnews.org/news/child ... -research/

Quote:
The proportion of studies that include children with a severe form of autism has fallen over the past three decades. Researchers presented the unpublished results today at the 2018 International Society for Autism Research annual meeting in Rotterdam, the Netherlands.[...]

There is no standard definition for severe autism, but it often involves a low intelligence quotient (IQ), little or no speech, or difficulty performing everyday tasks. About one in three people with autism has a severe form of the condition.[...]

Only about 66 percent of the studies reported the participants’ IQ scores or diagnoses of intellectual disability, the researchers found; only 42 percent included information about communication abilities and only 22 percent about adaptive behavior. Overall, 51 percent of the studies included children with severe autism.[...]

Bolding is mine.
If one wanted to be rude , they could say that severe autism is overrepresented in research.As stated in an article Mr Siegel had had co authored; an understanding of ASD's etiology and subtypes can only be as complete as the studied samples are representative.

Moreover I have honest concerns about how more representation of autistic severity would work on the peoples best interest.
How exactly could those people give informed consent to participate in your research? And how are the researchers expected to study them, without exposing them to extremely stressfull situations?

Imagine someone getting overwhelmed and thrashing their head whilst in an MRI scanner.


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Last edited by Spyoon on 16 May 2018, 12:55 pm, edited 4 times in total.

Trogluddite
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16 May 2018, 11:33 am

I notice that the report doesn't seem at all concerned that adults, whatever their degree of impairments, are barely represented at all - not even in the context of determining the long-term effectiveness of childhood interventions.

It also disregards that those of us who are deemed less impaired may still have profound insights into aspects of autism which children, particularly those with severe communication impairments, might experience but be unable to express. For sure, we need to be very careful whenever we speak on behalf of others on the spectrum; but which is better - a non-autistic researcher simply guessing at what internal psychology might affect autistic behaviour (all too common), or valuing the opinions of autistic people who may be able to offer at least some insight into their inner thought processes?


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ASPartOfMe
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17 May 2018, 1:17 am

It is going down not because of some conspiracy by elitist ND movement aspies but because the proportion of Autistics that are diagnosed is going down because more non severe autistics are getting diagnosed.


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