Why

Within my family there is clearly a "path of autism" which i can trace back for at least 3 generations.  The trouble is, I find it expremely difficult to identify when, in this famly history, the label "autism" should and could have been applied.  It certainly wasn't available for my dad (b. 1925, d. 2015).  Not much chance for me either (b. 1963).  Probably a much better chance for my son (b. 1992) and this is where more of the "Whys" come in. 

i can only say that, within a large family such as ours, certain tendencies and eccentricities were viewed as normal for us.  We would be far more likely to say, "He's just like his granda!" than "He probably should have an autism assessment", particularly when nursery staff, primary and also secondary level teachers conveyed no concerns at all, even when specific questions about typical areas of difficulty within our family (mainly to do with socialising) were asked.  This was all compounded because our son didn't feel he could share details of the extent to which he was struggling with us, although i accept that we didn't drill down and ask the questions we should have asked.

This has all led, probably predictably and inexorably, to the situation we now face, with numerous difficulties in adulthood relating to late diagnosis and lack of support during the formative years.  My son is angry because he was let down (by ourselves and also the education system).  We are also angry because we don't feel we had the information and support to enable us to identify autism and seek the right help, plus, also being autistic, we have our own difficulties and tendency towards overwhelm which were likewise never recognised (although we can recall quite clearly being blamed and marginalised for our issues).  To me it feels as though a switch has been pulled and we've been bounced into a different world.  We were told for decades that our issues were just us being "too sensitive" or "over emotional" or "lazy" or "clumsy" and making our way through was all down to us.  Now we are blamed for not being autism aware and feel unsure where this awareness was supposed to come from, especially in the earlier days of childrearing. 

To me it all feels like a can of worms in which we look back and try to fathom when it became possible to identify all of this - within our culture generally as well as within our stuggling family (and woe betide us blame wise if our family was behind the general trend).  However, these attempts to make sense of the timelines and the identification process plus work through our understandable anger do tend to keep us focussing on the past.  To some extent this feels necessary as there's some major reshuffling going on because we spent decades looking through the wrong lens.  But I'm also left wondering how much of our lives will be given over to this.             

Our own approach has been to push for as much information and support as possible - i.e. to try to catch  up on what we should have been doing all along, if only the word "autism" had been mentioned to us as an explanation for our difficulties.  It's included a mixture of using NHS and private diagnostic services, plus now local charities and groups and their online counterparts.  I must confess it all feels very late though, and services just aren't that easy to find or access unfortunately.  

"How did they miss me" is a very troubling question though, and Kieran Rose's article resonates strongly.  learnfromautistics.com/.../

Within my family there is clearly a "path of autism" which i can trace back for at least 3 generations.  The trouble is, I find it expremely difficult to identify when, in this famly history, the label "autism" should and could have been applied.  It certainly wasn't available for my dad (b. 1925, d. 2015).  Not much chance for me either (b. 1963).  Probably a much better chance for my son (b. 1992) and this is where more of the "Whys" come in. 

i can only say that, within a large family such as ours, certain tendencies and eccentricities were viewed as normal for us.  We would be far more likely to say, "He's just like his granda!" than "He probably should have an autism assessment", particularly when nursery staff, primary and also secondary level teachers conveyed no concerns at all, even when specific questions about typical areas of difficulty within our family (mainly to do with socialising) were asked.  This was all compounded because our son didn't feel he could share details of the extent to which he was struggling with us, although i accept that we didn't drill down and ask the questions we should have asked.

This has all led, probably predictably and inexorably, to the situation we now face, with numerous difficulties in adulthood relating to late diagnosis and lack of support during the formative years.  My son is angry because he was let down (by ourselves and also the education system).  We are also angry because we don't feel we had the information and support to enable us to identify autism and seek the right help, plus, also being autistic, we have our own difficulties and tendency towards overwhelm which were likewise never recognised (although we can recall quite clearly being blamed and marginalised for our issues).  To me it feels as though a switch has been pulled and we've been bounced into a different world.  We were told for decades that our issues were just us being "too sensitive" or "over emotional" or "lazy" or "clumsy" and making our way through was all down to us.  Now we are blamed for not being autism aware and feel unsure where this awareness was supposed to come from, especially in the earlier days of childrearing. 

To me it all feels like a can of worms in which we look back and try to fathom when it became possible to identify all of this - within our culture generally as well as within our stuggling family (and woe betide us blame wise if our family was behind the general trend).  However, these attempts to make sense of the timelines and the identification process plus work through our understandable anger do tend to keep us focussing on the past.  To some extent this feels necessary as there's some major reshuffling going on because we spent decades looking through the wrong lens.  But I'm also left wondering how much of our lives will be given over to this.             

Our own approach has been to push for as much information and support as possible - i.e. to try to catch  up on what we should have been doing all along, if only the word "autism" had been mentioned to us as an explanation for our difficulties.  It's included a mixture of using NHS and private diagnostic services, plus now local charities and groups and their online counterparts.  I must confess it all feels very late though, and services just aren't that easy to find or access unfortunately.  

"How did they miss me" is a very troubling question though, and Kieran Rose's article resonates strongly.  learnfromautistics.com/.../

ppI can see genetic correlation in my family (I have traits of both my parents of which one is definitely Asperger's), my father's brother's/sister's/nieces/nephews and some of their descendants demonstrate some paternal traits.  I go back four/five generations in order to link up with other paternal descendants - I can see traits there.

Maternally, I can see other traits across my grandmother and her siblings (and their descendants).

Of course, unless you were really struggling at school, then you appeared normal albeit other observations were not investigated

Very thoughtful and thought provoking words JB!

Your point about making sense of the timelines and risking focussing too much on the past relates to a conversation I had with my wife only this morning.

I was talking to her about blogging and how the process helps me link things together, like making a jigsaw by first cutting out the pieces, then painting them, then completing the puzzle. She asked why I even needed to piece things together, and that's a really good question that I don't have a good answer for. I know that it has something to do with understanding the "why" questions and using the answers to develop more healthy "personal policies" for the future (e.g. if *this* happens, I always have the option to do *that* and that's OK because.....). Also simply feeling more comfortable in my own skin and happy with my choices, through having less stress caused by the "shoulds" that come from the NT world.

Personally I'm feeling very positive about the future, as my exploration of the past has somehow made me feel more free.

By the way "snap" - we suspect three generations; me (now diagnosed), my dad (99.5% certain), and his mother (75% certain). I once wrote a blog post, now deleted, called "How to fail to notice your autism when you're actually autistic" that I keep thinking about rewriting, as it puts a humorous spin on how we all tumbled through life unnoticed.