Published on 12, July, 2020
Hi there
This is my first post on the forum since I was diagnosed with mild ASD a few weeks ago. I'm still waiting for the report to be posted to me which I am finding frustrating!
I only began seriously to consider ASD as something that might fully apply to me when a friend suggested it to me a few years ago. More or less as soon as he suggested it I knew it was probably right. I was very positive about going through the diagnostic process, stabilising a more accurate view of myself and using the diagnosis to help find work etc. on firmer foundations. Although the result was expected I did not expect it to undermine my former view of myself as profoundly as it has. I am now surprised to be feeling quite despondent and depressed. Perhaps this is because as the diagnosis has forced me to reassess a lot of the key episodes in my life and the various tenuous 'footings' I have existed on in this world. Just dwelling on the past without support is not good. From this point of view, if any professionals are reading this, a prompt referral after the diagnosis would have been very helpful as diagnosis can be quite difficult to take on board! Anyway, I think the particular feelings I am having are probably not commonplace because they seem to me to result from having been encouraged a lot to 'be more outgoing' than I feel comfortable with, eventually making me see myself inaccurately. Now I am paying the price for that false self-image.
Several people have posted recently about anticipating a diagnosis, about how a diagnosis can be useful for accessing support and providing an explanation or box for the person's difficulties and also viewing their ASD purely negatively. Taking these in turn, there were several things about the diagnostic process and my results which did not conform to me expectations. For example, the fact that I do not have flat speech and that I have always played sports a lot had little bearing on the final decision. Due to these and other misconceptions about ASD I would never have expected to meet all six diagnostic criteria.
I think the explanation box function of the diagnosis does correspond to a really helpful aspect of it, because it allows the causal processes in recent life events to be disentangled. For example, my inclination to pursue activities on my own was not because of circumstances in my life at the time. I felt uncomfortable among unfamiliar friends of friends simply because of this ASD, not because of them or the circumstances. This is all helpful, however, it does beg the question of how this ASD thing got started in the first place. Why did I not develop normally? There are very few clear, general developmental factors to explain it, as most people here know: it's just 'one of those things' that can happen. Certain things in the environment and probably genes make it more likely. The comforting explanatory box is not quite so 'nice' when it becomes about one's deepest early personal experiences or innate personal constitution though.
On the negative valuation of ASD, I do totally get that there is no way around the fact that it is assigned because of things people CAN'T do. It therefore represents, to me personally, extremely low ability at something. Having mostly been 'good at' nearly everything this is how the condition sits uneasily with me. I think where we can get out of that depressing viewpoint is to realise that the value of ourselves as whole people is different from the ASD condition, which is one aspect of ourselves. In a similar way, a person might be extremely short-sighted, very physically uncoordinated, unable to walk or find reading almost impossible. Luckily, I don't have any of those conditions. Some of them, to be sure, are easily corrected (with glasses, for example) for. But then again, perhaps with the right approach, 'reasonable adjustments' can be made for ASD to a greater extent than they are at present.
Other conditions may not have effects as far-reaching as ASD. But if the condition affects everything about you then all of the good things are linked to it as well as the bad things. Therefore, ASD can end up giving you skills in other respects. I reckon that it is probably linked to some kind of coping mechanism in childhood, so in that sense it has helped us to become who we are today.
Happy posting!
Yes, totally agree with you that being left alone with some diagnosis isn't a good thing. Seems anything only happens if you get really bad but as long as you say 'yes' when they ask if you can keep yourself safe they just keep waiting until you either got better on your own or do something that demonstrates that the answer wasn't true.
Don't expect too much from this letter. Maybe yours is different but mine said on the first page that it would contain advice to help me get through life (which I find a bit strange because I don't believe in heaven or something, so life shouldn't be some unpleasant thing to get through before something better starts) but the letter contained no advice at all, it just listed all possible shortcomings and whether I have them or not. It's probably not unusual if your answers have been bent somewhat to make you fit all the criteria. Seems more people want to be diagnosed with something, so that suits them, given that you have to tick one or more boxes in every area. Like English isn't my first language and during the assessment there were topics I don't normally talk about to others, so the fact that I sometimes stopped in a sentence to find the right word seems little surprising to me but was used as a criterion to tick a box... Guess in the end you need to decide if the things where you do agree with the assessment are the ones that matter - if they are then - well, yes, what then? Nobody is going to change you, you won't be able to change it, and judging from your post you aren't a child or teeny, so you are probably not autistic enough to realistically ask for anyone to make any adjustments. If it was as simple as buying a different mouse for you, or a special chair or desk, that would be useful, but you would need people to make adjustments to their attitudes, to what they interpret into the way you behave - nothing expensive by any means, mainly free in fact, but not particularly likely that it happens...