Comment on: What should autism research focus upon? Community views and priorities from the United Kingdom.

6 May

A paper came out in the past few days: What should autism research focus upon? Community views and priorities from the United Kingdom. I haven’t seen the whole paper but here’s the abstract:

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

My comment is simple: Yes. Yes. And yes:

1) There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants.
2) There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives.
3) There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.


By Matt Carey

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3 Responses to “Comment on: What should autism research focus upon? Community views and priorities from the United Kingdom.”

  1. Anne May 7, 2014 at 01:04 #

    Yes!

  2. Leigh Anna May 7, 2014 at 02:27 #

    I’ve been reading a lot lately about research on the human microbiome, and how it affects our metabolism, immune system, and even our mental well-being. I’d love to see more research on the microbiome’s effects on the symptoms of autism.

  3. Eileen Nicole Simon May 7, 2014 at 11:39 #

    I found the full article by going to aut.sagepub.com and searching for Pellicano (the lead author). Participants included 72 people who participated in 11 focus groups and 10 interviews. Opinions were also gathered by an online survey completed by 1929 people. I was most interested in the focus group approach. Separate groups included 14 autistic adults, 27 mothers with children aged 5 to 19 years, plus therapists, teachers, etc. and researchers. Comparisons were made to how research priorities are determined by the IACC in the US. I went online to look for ways to become a participant in a focus group. It looks to me like the closest thing available to most of us are online blogs.

    My autistic son in now 51 years old, and from my perspective, autism research has been stalled for at least 60 years. The neurological basis of developmental language disorder and repetitive movement disorder might have been understood decades ago, and as the result of all of autism’s known causes. In addition to prenatal rubella infection, exposure to valproic acid, and even thalidomide and alcohol during gestation, the most commonly reported predisposition for autism has been trauma and respiratory depression at birth. I will continue to cite two seminal papers on brain vulnerability: Kety SS (Bull N Y Acad Med 38:799, 1962) and Windle WF (Scientific American, Oct 1969).

    The paper by Kety is free online via PubMed, and reported blood flow to be higher in nuclei of the brainstem auditory pathway than anywhere else in the brain. This has now been confirmed in fMRI scans. The paper by Windle reported most severe damage by asphyxia at birth to be in these same brainstem auditory nuclei.

    If Windle’s data is “too old” the experiments (with monkeys) should be repeated, and maturation followed by fMRI rather than traditional neuropathology. Post-natal brain development was disrupted in monkeys with auditory system damage. Monkeys are not expected to learn to speak, but the same damage has been found in infants who died soon after birth, and development of the cortical language areas depends upon trophic neurotransmitters produced in brainstem auditory nuclei.

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