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Fragments

The other day I rang the Autism Spectrum Service (the people that tested me) to make a complaint. I don't think the testing process was up to the job. Asking me to look through kids picture books or play with toys from a Christmas cracker or watch dodgy videos of people having a dinner party cannot be a proper test surely (it's something called ADOS apparently). 

What they are looking for is whether my results or behaviour, in respect of these situations, is consistent with the results given by people they know to have a positive diagnosis. So it's a bit like going to the doctor and being told on the basis of a stuffy nose and a headache that you have a cold. The doctor doesn't know for sure, he's making an educated (to a greater or lesser extent) guess. In an ideal world he would be able to sample your blood or DNA in some fashion and know for sure. This isn't how neurodiverse/ASD (again whatever you want to call it) conditions are diagnosed. All of this means that sometimes some people are going to fail to get a diagnosis because it's guess work; some people - particularly in adulthood I would think - can progress through the experience of testing in a way that convinces the diagnostician they are 'normal'. Whether I am such a person I do not know. Not knowing is a particularly frustrating characteristic of this whole experience.

On Tuesday the diagnostician will be contacting me (at least that's what was agreed). I doubt any good will come from this since they are unlikely to believe they have made a mistake (if that is indeed the case) or that their testing process is flawed when dealing with adults, or whatever. There is also the issue of the 'Non Verbal Learning Difficulty' condition flagged by the Work Psychologist which the diagnostician variously decided was not a thing and then was.

There is an online test one can take called the Autism Spectrum Quotient (AQ, like IQ I suppose) which was designed by other experts (so it claims). I was not set any test by the diagnostic team anything like this. Having undertaken this test I scored a result that is well within the result consistent with a positive diagnosis. I know it is an online test, but it's based on an actual test; so why is this test not valid, but asking an adult to look at pictures of frogs flying on lily pads is? Is this bias? Is the AQ test discredited or is it just the choice of these particular diagnostic people?

The greater problem is that there is no holistic approach to all this. Regardless of the outcome the diagnostic people are not part of the DWP and will not, under any circumstances, deal with them irrespective of my circumstances. I tried to explain to them the problems of claiming and dealing with the DWP and trying to find a suitable job, but they can seemingly do no more than wring their hands. Conversely the DWP, the Work Psychologist at least, is the opposite. She is part of the DWP and knows about claiming, but cannot make a diagnosis. 

Until we have a system that plugs all these different aspects and services into a communal whole how can people ever expect to be helped. All these are interlocking aspects comprising one's life experience and cannot be examined viewed or judged alone.

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