Published on 12, July, 2020
Over the last few weeks and months, I have been asking my self the question. Why my parents didn't seek diagnosis while I was a child. I saw many educational psychologists and other professionals.
I got through so many pencils, because I used to chew them, my concentration levels at school was poor (it still is). I started school in the late 70's, even at an early age i was struggling, from what i can remember even before I started school there were problems.
I remember having the struggles of being singled out because my work wasn't up to scratch.
I'm now 47 and stuck on a waiting list that is making me feel anxious.
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/.../
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.
Oh wow, just the title "How to fail to notice your autism when you're actually autistic" would draw me in straight away! Please do rewrite it!
There is definitely a huge need to reflect and make sense of things, I can't deny. I do this myself quite a bit and especially when certain memories pop up unbidden and I find myself thinking, "Oh, that was all due to unidentified autism. It's clear now."
Then again, I also wonder, "What's in a word?" Because all of the issues, occurring again and again in different generations, were still identified somehow, just more as a personality type, and we did try to help ourselves and other family members whenever these cropped up. The trouble was that whenever something arose it was treated as a one-off occurance with which we coped as best we can, often drawing upon resources relating to social anxiety, or depression or OCD, or whatever seemed to fit. So what IS in a word? Well, it gave us a kind of unifying theory with which, yes, we can look back and gain a better understanding of what was really happening, but also we can cast forwards and plan and prepare with much greater awareness and self-knowledge. My rational mind would prefer to veer towards looking forward, but there are so many scars and painful memories that also demand attention.
In the light of all of this, I do still ask, "Why?" But I also sit with it for a while too and wonder what's going on for me at the next layer down. Am i asking in a curious, thoughtful way, am I fearful to know, do i suspect that others didn't really care for me enough, do I need to vent my anger or blame etc etc? There can be a lot of assumptions sitting in my "Whys".
I can well understand the need to explore and understand, plus even to hold others accountable, especially given that they were adults in the position of parents while we were vulnerable children. I can see now that the things we overlooked as parents were significant and damaging and that this is all tantamount to neglect. i'm obviously deeply sorry and regretful. But i can only change from now on. And whilst i could very easily go back to my own, now elderly mother with my "Whys", I tread carefully. I don't avoid subjects, i cry and sometimes I rant, but i can also see may positives in our autism, many opportunities to support from now on, plus a chance for some late-life conversations that are very honest and raw but which also bring us closer. We are all, after all, very limited human beings with a short span of life here.
Glad you liked it & I love being able to spread a little happiness!
I've just read your blog and found it so funny. I keep hearing that autistic people don't have a sense of humour but that was hilarious. I really recognised myself in that blog. It's good to laugh about myself for a change. Thank you!
Oops - forgot I had set it to private. Public now. It's my new site, only made it last week :-)
Not been on that site before but have now registered and sent a request to view.
I guess almost anyone on this thread might enjoy it so there's the actual page on the blog (it's the only thing there currently). See what you think :-)
I might still keep adding things to the story as I think of them, and I'm thinking of rebuilding my blog with a succinct synthesis of lessons learned from the whole journey.