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Troubling stats

Jenny Butterfly

When I see stats regarding life expectancy and suicide rates I find it all rather alarming whilst at the same time wondering how reliable these figures can possibly be.  Given the lower diagnosis rates in older generations plus probably a significant proportion of autistics who are misdiagnosed, such figures must surely have a large margin of error.

I'm worried nonetheless.  When I was diagnosed last October I specifically asked the Autism Team why they only looked at individuals (especially if, like me, a person was prompted to seek diagnosis for wider family issues) and why, given that their website referred to autism being largely genetic, one diagnosis didn't trigger an offer of screening and support for the rest of the family.  Fair enough, people ARE individuals and entitled to their confidentiality and their autonomy to refuse such an offer if they wish.  But why can't the offer be at least made?  And why does each individual within the same family then have to go back to the end of an (often extremely lengthy) queue if, following on from one diagnosis, they are prompted to consider their own possible diagnosis?

I suspect it's down to funding and, predictably enough, I got an explanation regarding the importance of each case being treated individually plus some downplaying of the info about genetics.  "Why did I think this was so important?" they asked.  My answer was that if the other information on their website about the suicide rate being 9 times higher is correct, identification and support should be a top priority.  I got a rather weak and watery, "I'm sorry.  We don't do that" in reply.  :(

www.psychologytoday.com/.../early-death-in-those-autism-spectrum-disorder

Parents

  • Hi again Jenny B. You've made a good point. If there is a strong genetic cause for ASD and if they really believe there is yet another strong link to suicide, then identifying those at risk should be a much higher priority. The lack of support could be a much bigger problem! But another point you made seems sadly true. Lack of willingness to finance Autism diagnosis and support. Most are not dangerous, so why help non dangerous individuals to help themselves? Wait and see who becomes dangerous, then help that small minority far too late. Sometimes I do wonder who REALLY thinks in black and white! 

  • in reply to Rip Van Wrinkle

    Yes, I think they really believe that.  Tees, Esk and Wear Valley state it on their website, after all.  Although i have my doubts about their stats, to me this still means that this increased risk should be met with an appropriate level of care. 

    What I was getting at was that if they're saying that genes are the main factor then presumably in their eyes the undiagnosed members of my family would be at significant additional risk.  To many that would be a call to action.  And yet they do nothing.  

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  • in reply to Rip Van Wrinkle

    Yes, I think they really believe that.  Tees, Esk and Wear Valley state it on their website, after all.  Although i have my doubts about their stats, to me this still means that this increased risk should be met with an appropriate level of care. 

    What I was getting at was that if they're saying that genes are the main factor then presumably in their eyes the undiagnosed members of my family would be at significant additional risk.  To many that would be a call to action.  And yet they do nothing.  

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