The cost of everything and value of nothing?

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In last year’s Scottish Government’s Autism micro segmentation study researchers attempted to estimate the economic costs of autism. While the complexity of such a question, for me at least, makes it impossible to address satisfactorily, as a parent of an autistic child a more basic question comes to mind. Is it even ethical to consider neuro diversity in this manner? Autism is a part of being human, a legitimate way of being. Should the debate be so blatantly reduced to pounds , shillings and pence? Granted the ‘happiness ‘ of autistic people gets a passing mention but the main thrust, whether unwittingly or not, is the projected costs of support and resources based on genetic characteristics of a particular group of people. If for example we applied cost differentials based on the cognitive and intellectual capacity of the general population eyebrows would surely be raised. Why is it different for those who are autistic? It is a dangerous route to go down.

The study carried out a meta analysis of relevant global research and used this in conjunction with the specific situation in Scotland to arrive at suggestions for future savings. I’m sure I probably lack the academic prowess to fully understand but I would think it’s fair to say that the findings could be considered general and broad in nature.     One weakness must surely have been the limitations in the size of the sample of people living with autism who contributed. The total sample was n = 950,   (a further 654 responses were discarded largely for not completing all the questions apparently.) In Scotland the number of people with autism is approximately 56,000.

  If we conservatively considered that for every person living with autism another 2 people are affected by their autism, then we could suggest a figure of 168,000 as the number of people living with autism in Scotland . The sample taken as a percentage of that autism population then is just under .6 %

I am not entirely sure if online responses from those who found the time and space to participate have any wider representative validity but it is limited I would think.

Incidentally this is a similar figure to that used for the ANS  ‘consultation ‘ that informed the final phase of the S.G.’s Autism Strategy. ( approx 1200 responses from online responses and at staged events, gives a figure of just .7 % ) It is just wrong to give the impression that this is anything other than the views of a very small part of the autism community.

 While I am no statistician I think that it must be clear that any conclusions based on such small samples must have limitations to their validity.

 Clearly there is a major problem with engagement between the government and the autism population in Scotland. Why is this? What efforts are being made to address this problem? While the methodology in the micro segmentation study presumably meets the rules of validity for clinical, empirical, scientific research, why can’t the views of more people actually living with autism be included or even heard?

   The numbers for individuals with an ASC diagnosis who have contributed to this research are just as poor sadly. Of the 950 responses only 114 were from autistic people themselves ( approx 12%)

  Of the 55,939 autistic people in Scotland this represents only .2 % 

  This would suggest that those with an autism diagnosis are even less inclined to contribute than the  wider group of people considered to be living with autism. Perhaps this is not surprising but should we not be engaging more fully with the group of individuals most directly affected by autism policy?

   Why can’t government departments with all their resources and research associates come up with better ways of facilitating a debate with the autism community in Scotland? Do they actually not care and are simply concerned with putting a veneer on the matter?

   Many, myself included, have experienced being ostracised and or discredited when attempting to enter the national debate about autism services in Scotland or when seeking to bring about improvements locally. The debate is owned and controlled by politicians and those on their payroll – professionals who are compliant with flawed policy while receiving a substantial slice of the budget, services providers that are propped up by government grants and those taken in by the fancy terminology but who fail to grasp the bigger picture.

  My precious boy is now 12 and has quite literally got no voice in these matters that will affect him so much, particularly in later life. Until real engagement is facilitated with the autism community it will remain essential to ask questions on his behalf.

As a footnote the comments in the study’s appendix are very interesting.

I.B.A.

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