I’m at a sort of turning point in my life for the time being; where I finally really take ownership of asperger’s syndrome*. Like say “I have Asperger’s Syndrome” to my family, for example (so far the only example).
It may be a surprise that it is even a turning point. It is several years ago since I discovered aspergers syndrome and I have spent probably thousands of hours researching, watching videos and interacting online in relation to aspects of it, immersed in a sense-making process akin to what Cynthia outlines in her series “I Think I Might Be Autistic“*:
THE SENSEMAKING PROCESS
- Shift in identity – identification as aspie/autistic
- Retrospection – looking back at key life events in the context of this new identity
- Building narrative accounts – retelling the story of your life in light of AS/autism
- Sharing your narratives – strengthening and preserving your stories by sharing them with others
- Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes
From Developing a Sensemaking Narrative by Musings of an Aspie AKA Cynthia.
Cynthia’s list resonates well with me, but not in that order. In my case, step 1 is the last and hardest step. That is because “identification as aspie/autistic” is not just about what I am, it also represents a collective identity. The disadvantage of my extensive research of first hand accounts like blogs and forums is that I’m acutely aware that a lot of different people already own Aspergers/autism… define it and represent it. That makes me feel awkward, like standing too close to a group.
The community aspect – to claim a collective identity, a belonging – seems like the big drawing card for many who want an ASD diagnosis (and I mean want it badly). The diagnosis, given (or withheld) by medical authorities outside of the aspie culture, serves as a vital cultural badge for people within in it; a sort of tribe emblem. I don’t really like that; it seems like an unhealthy foundation for a subculture to base inclusion on a medical diagnosis for a disorder.
I guess that in some way it does the belonging-trick for me too; it assures me that I’m a kind of normal, just not the normal kind of normal. Yet for me the collective identity is also the most awkward aspect. It stands for a territory already crowded with other people, teeming with agendas and people politics.
Rented rooms & video games
The sensemaking narrative I’ve told myself about discovering Asperger’s Syndrome was that I came across it online while searching for information about noise sensitivity. That is true, but then it occurred to me a while ago that I came across it much earlier first.
I first noticed there was something terrifyingly personally relevant about aspergers about 10 years ago, so that was in the pre-Internet era. I worked in a casual cleaning role on a school that had a special ed class for kids with Aspergers which was in my cleaning domain, and I was meticulously instructed about how to go about cleaning that one classroom.
First of all, the staff said, don’t move anything to a different place … not even a pen… since the kids will notice any change and may freak out. And don’t clean if any of the kids are in there, they don’t like strangers.
The kids’ desks were all wall-facing with wooden dividers between them to ensure a distraction free environment for each kid (think Vulcan primary school, just low tech). Each “study stall” was equipped with a short row of picture cards to provide a step-by-step overview for each kid about what to do during the day. A girl roamed the common room between the classrooms and pestered the normal kids out there with odd repetitive questions; they mainly ignored her. I felt empathetic; something about her fundamental situation stroke a note with me.
One of the teachers came over to me outside, having a cigarette break, and talked about the kids. I liked him. He said that they provided the kids with stability & structure and taught them life skills so they wouldn’t end up in institutions. The sad truth, he said, was that many of them would grow up to an adulthood in unstructured isolation, with no friends, living of coke and burgers in small rented rooms doing nothing but playing computer games by themselves all days.
I felt a rush of embarrassment as my own isolated youth in small rented rooms flashed up in my memory. For a few seconds, I scrambled frantically inside myself trying to ensure that I did not look like such a miserable adult with failed social skills. Then I remembered that he didn’t know anything about me and felt almost relieved.
I meticulously disassembled my suspicion with Reason. The two facts I thought I knew about Aspergers Syndrome was that persons with Aspergers had no friends and no imagination. While I did have the friends issue, I’ve always had a super powerful imagination.
I also reasoned that I didn’t play computer games – I didn’t even like them. I didn’t drink coke or ate burgers either. I also wasn’t in a special class in school when I was a kid, and didn’t freak out if a pen was moved around. So clearly, I was not like their kind at all. Relieved, I let go of the scare and didn’t remember the little episode again until fairly recently.
Then a few years ago, I ran into the Aspergers Syndrome again during online search for information about noise sensitivity which kept landing me inside forums and blogs for and by persons with Asperger’s Syndrome – this time the adult version.
I noticed that I had a lot more than social difficulties and noise sensitivity in common with aspies. A chain reaction of “aha moments” rolled out as I could suddenly mirror myself in others experiences and see aspects of myself I had thought were too unique and weird for words. My sensory vocabulary grew, and I found ways to express how I perceive the surroundings; current and past nameless experiences for which I had thought there could be no language, neither to clearly define my perceptions in my thoughts, nor for communicating them to others.
That was the start of my sensemaking process which took place over several years and is in a sense ongoing.
In 2011, I started seeing a specialist psychologist in a clinic specialising in Aspergers, for psychological counselling. I didn’t think I necessarily had full-on aspergers as such (or maybe I did but wasn’t ready to admit it), but I reasoned that an ASD specialist would be more likely to understand and include my issues with noise sensitivity and other severe aspie-like issues which may not look strictly psychological but are part of my situation. My stated objective was to clarify and try to solve my problems with employment.
Eventually the question about whether I *really* have aspergers began to grow increasingly important though until I was speculating about it all the time: do I meet the criteria or not? I was not in doubt that I have many traits and that my mind fundamentally operates in an aspie-like way, but I wasn’t sure if I as such met the official criteria**.
This was long after he’d done the Australian test for aspergers in adults with me (a questionnaire undertaken during a session) and showed me that I was solidly over the threshold (119 points, where the threshold is 65), and after we had been working on my core issues like executive dysfunction, sensory overload, social difficulties for more than a year… all the relevant aspects of aspergers, just without mentioning the A-word.
When I finally asked, I got a prompt and very sincere Yes “no doubt about that at all”. It has later been followed up with an official document, which I admit was necessary to close the case in my mind. It had a strong symbolic impact; like a document of ownership of Aspergers that says “this is what you are and you can’t escape, now deal with it”. Accepting that ownership is a relief. It finally halted the endless speculative loop of relentlessly categorisation and re-categorisation of behaviours that I was caught in for a very long time. So That’s It.
Beyond sensemaking: disclosure
The sensemaking process Cynthia outlined focuses on taking ownership of the condition in an introspective way and sharing the journey with like-minded people who can help provide support, insight and companionship. It is primarily an inside-out process – making sense of what’s inside oneself.
Beyond that journey lies a new sense-making process; the disclosure phase. That involves an outside-in process where close family members, friends and perhaps a partner become aware of and make sense of the diagnosis in their own, uncontrollable and perhaps unpredictable ways.
Part of that process is to figure out who to tell and how to effectively communicate it to persons who doesn’t have any advance knowledge of autism but may be influenced by myths and stereotypes from popular media.
The process may look like this:
THE DISCLOSURE PROCESS
- Complete the personal sensemaking process and become ready to disclose
- Decide who to tell
- Decide how to tell it
- Prepare supporting information and support from network, if available
- Decide when to tell it and arrange a meeting
- Wait for and support their process of understanding & acceptance; answer questions and follow up with more information if required
That is where I’m at. During the last few months I have told my closest family members that I have Aspergers. It was important for me to do it because it has a strong explanatory power in relation to my unusually troubled history. I feel they deserve to know and I really badly want them to understand me, and now it seems like there’s a chance. My next post is about how I went about the process of disclosure, and what the reactions were.
Illustration: “Alien Landing” by Anarres on Openclipart.org
* So it is now officially named Autism Spectrum Disorder, but I’ll use aspergers unofficially here on my blog and definitely use it for explaining it to people who are not into the peculiarities of diagnosing autism.
** It helped that DSM-5 has replaced/is replacing DSM-IV. I find DSM-5 much more clear cut and unambiguous, especially after reading Unstrange Mind‘s helpful walk-through of DSM-5 (recommended!)
21 thoughts on “My Aspergers Journey”
The powerful thing about the autistic blogging community for me was that I was accepted based on my own observations about myself, *without* the formal diagnosis. And I can think of several other people who’ve had the same experience. So I disagree with you on the medical diagnosis being the basis for the autistic subculture or collective identity. Sure there are people out there who think that people who self-diagnose are just posers, but that’s probably true for every subculture: there’s always people who want to make it exclusive, with them on the inside and everyone else on the outside. I’m sure this happens in the wheelie community for example as well, with some people wanting to exclude people who don’t need a wheelchair 24/7, like MS patients. Is that a community based on a medical diagnosis?
I don’t think the belonging to a group is the drawing card for most people seeking a diagnosis. Yes, it is powerful in its own way, to meet people who have some of the same experiences as you have. But I think based on all the stories I’ve read about people’s diagnoses, for most it’s exactly the same reason as you give: the symbolic impact, being able to close the case, stop wondering, and start dealing with it.
I think that’s a key reason in virtually all cases where people actively seek a diagnosis yes, but it isn’t an either/or situation… In most cases it is probably a multitude of reasons, some defined & expressed and some not. An official diagnosis definitely plays a role in the autism community, there are heaps of signs of that. For example, when you make an account on Wrong Planet, there is a question whether you are officially diagnosed or self-diagnosed (plus some more choices). Why make that distinction if it doesn’t matter? That’s just one little example.
What I find problematic is that the autistic community is a cultural, social construct whereas an autism diagnosis is a psychiatric construct and conditioned on “proving impairment”. I’m not saying the whole culture is not healthy and overall I’m grateful for its existence and the inclusion and insights it provides, but I don’t like that element.
An official diagnosis isn’t geared to factor in sociological importance, and can sometimes be a fairly arbitrary construct. Well ideally not, but the quality and accessibility fluctuates wildly. E.g. in the US an official diagnosis is out of reach for many because of the cost alone combined with the rudimentary welfare system, plus access to relevant professional isn’t just so either. I would not have a diagnosis if I lived in the US for those reasons alone. I most likely would not even have pursued it and I wouldn’t have had ASD-based councelling (which has been extremely helpful). Even when people do have access, how the criteria are interpreted may vary wildly between professionals, depending on their experience and competency and attitude.
Also even if a person doesn’t meet criteria, that doesn’t necessarily mean the person is not autistic – it may just be that the person isn’t autistic in a stereotypical way that meets all the criteria (although DSM-5 is an improvement in that regard). It isn’t black and white, there obviously has to be a boundary somewhere but being on one side or the other shouldn’t have to define a person’s identity and degree of group membership.
You too would have been just as autistic without your official diagnosis, which you had to push for and go through strong efforts to get. Someone else may be just as autistic but have less determination and self confidence in the matter; as you mentioned the online autistic community has played in strong role in that and not every autistic person may be outgoing enough (virtually) or web savvy or motivated or social enough to make those connections.
So what I mean is – why put so much cultural and social power of identity in the hands of medical professionals and criteria that don’t reflect the complexity of what autism is and can be.
(to be sure, I very much trust and respect the professional I’m seeing, but there are many others I wouldn’t, especially for a one-off session. Also, I saw him for a good while before fully being ready to trust his professional opinion… I had to build trust first in order to expose enough of how my personality works to trust his opinion. OK so I’m a very sceptical person)
Also, I didn’t mean that people in the community are judging others for being self-diagnosed (although some do actually… but that is just stupid). It is more that many seem insecure of their own identity without a professional diagnosis to “prove” their belonging to the category “autistic” (/ aspie).
(I am not saying that I myself am beyond that mechanism – because I’m not)
I actually think that it would be wise to keep the label aspergers unofficially (and other nicknames… perhaps autie is better because it includes LFA) – and to use nicknames to separate the cultural and medical meanings of autism. Because while sure it overlaps (as it should), the sociology of autistic culture is so much larger and more complex than the official criteria and so much larger than individual diagnoses.
However, for me that wasn’t the main issue with aspergers/autism being related to a collective identity anyway. The main issue is more the fundamental tension between collectivity/group dynamics VS my solitaire personality and lifelong identity as a miscellaneous person who doesn’t fit into categories.
Thanks for sharing this well-thought-out (and well-written) piece! I’ve been on a similar journey, though not for as long as you, and have also found Cynthia Kim’s writings very helpuful… I also, however, haven’t followed the exact order of building my own sensemaking narratives and disclosing, and I think that each of us must come to important events in our lives from a perspective that is truly our own, which (to me) means there aren’t any inherently correct or incorrect ways to make this journey.
Here in the United States, we’ve just celebrated our annual “Thanksgiving Day,” a tradition in which we gather as families and are encouraged to reflect on what we are individually and collectively thankful for (and then to go shopping and spend lots of money at pre-holiday sales). I was able to spend some time with my only surviving parent (my father) and my only brother (and his family), and while I hadn’t originally planned to disclose my Asperger’s to them at this time, I did in fact tell them about my diagnosis and a good deal about ASD. I found that I really did NEED to do that in order for our visit to make sense to me and for some of the things I did to make sense to them (at least from my perspective). And while the actually disclosure wasn’t without pain, the result (so far) has been positive… for me, for my wife, and for my family, as best I can tell.
Thank you for your lovely comment:-) and for sharing your experience with telling your family at Thanksgiving, that was lovely to read and seems like a good use of opportunity, and I’m happy to hear that their response was positive. (I am yet to hear about a very negative response, and also had positive responses myself).
I had to be more planned about it because my whole family lives on the other side of the planet, and I haven’t kept regular contact with any of them over the years, such as regular phone calls or emails (in the process of change since earlier this year after I’ve scheduled contact with each person as a recurring task in todoist:-)… That has made an amazing difference in my relation to my dad already, now talking with him on the phone every second week!) They also don’t live together and are rarely together, so I had no choice but to schedule to tell each separately. That made it more of a planned, prepared project than would otherwise have been the case I think.
It is a very good point that the construction of sensemaking narratives is highly variable and individual. This is a lovely way to say it:
Very true and well put:-)
I guess the value of constructing an ordered list isn’t that the order should be in that order, or that all the elements need to be there, but merely to give an overview over likely key elements and show that there is an ordered way through the process if needed. I tend to find lists very helpful, sometimes as recipes to follow, and at other times just as a skeleton structure to organise my thoughts around.
Thank you! and yes Cynthia’s writing is a gem! Always very inspiring and helpful in clarifying complex neuro/psychological aspects and processes.
While I can definitely see the good aspects of being part of a community due to a diagnosis, I find it odd that some people want the diagnosis simply to fit in (though I don’t doubt that is the case for some). I actually had the reverse experience. I was surprised and excited to discover the online autistic community after realizing that I was very likely on the spectrum because when I first started reading and researching about AS, I felt very much alone. There isn’t a whole lot aimed solely at adults who are late diagnosed (though there’s more now than there was 2 years ago when I first started looking).
Like you, I had flirted with the idea that I might have Asperger’s for years. I took the Wired AQ test soon after it came out, which Googling tells me that was in 1998. I shared the results with a friend who assured me that there was no way I could be autistic because “those tests don’t mean anything.” And now here we are, in the wake of disclosure, figuring out what happens next. In the same what that you went about sensemaking in a different order, I went about disclosure in a different order. Sort of starting at the very inside, leaping to the big outer pool and now filling back in around the middle. I’m not sure that was the “right” way to go about it, but it was what worked for me. I needed to get to the right place to finish up my disclosures and now I have and that feels good.
It’s great to hear that you feel like you’ve reached a place of closure with your diagnosis. I know how important seeing that diagnosis on paper can be. It’s like it’s finally irrevocable or something, which is strange because nothing about us really changes just because another person has validated our suspicions.
And thank you for the kind words about my blog. 🙂
You are welcome and thank you so much for your great writing… It helps a lot of people.
Like Kent says in his wise words above, there is no right or wrong way to go through the process…
Actually I just told my cousin Yesterday on Skype, and we had a long, very interesting discussion about our family and their shared traits. I’m going to email her the same “info pack” as I sent to the others, it has proved very useful. I’m planning to translate it and attach it with my post about disclosure to family (coming soon).
And I said to her it is not a secret (she asked). She is a very considerate, diplomatic and trustworthy person and won’t go around telling everyone, but this and that I have given my mom green light to talk about it to her sisters if she wants do (if she is being considerate and keep in mind it is sensitive information), means that “the ball is rolling”; the tight barrier between what people know about me online (anonymous ID) and offline is opening up… slowly and cautiously but irreversibly. I suspect this will have some very interesting repercussions both for my maternal family’s understand of me and my history, but even more interesting for their understanding of themselves and the family culture. They won’t be able to learn much about high functioning autism without identifying our grand dad (my mom’s & aunties’ dad) as a most likely classic high functioning autistic, and what they’ve always referred to as “the [family name]-ese genes” and “inherited from grand dad” as typical autistic traits. “It” is an invisible source that fuels many compulsions, phobias, “neuroses” and many eccentricities which they are all aware of and refer to often, it just doesn’t have a name apart from “typical [family name]”. If they figure this out, then they’ll get to see that it is not just a big bunch of random tendencies, but a consistent, pervasive system with an official name… This could have repercussion also for younger family members, some of whom have struggled a lot. That is very interesting.
I have just returned from a long vacation with Tyoma to find this jewel waiting for me. I need to read, re-read and think again before I can make an appropriate reply, but I must say this is one of your finest articles and is stunningly well written. I also reached stage 1 last. And if you don’t hear from me, the words have turned into more art for you….
Thank you so much for your great compliment:-)
I’ve been away from blogland for a while, and then I thought: Wonder how Mados is doing? And then I found this wonderful post. Your story resembles my own in many ways, including the part about disclosure.
I have decided to seek a formal diagnosis, not in order to fit into the community or to feel that everything falls into shape. But because I need help to cope with recurring depressions and with my labour market behaviour, both from the Aspie perspective.
Regarding my labour market behaviour, I am just about to change jobs. Again. After having had numerous conflicts with my manager and failing to fit in socially. Again. Asperger plays a central role for understanding this pattern through almost 20 years in the labour market. And for that I need a formal diagnosis and some kind of help.
I’ve got a referral to a psychiatrist and an appointment in June 2014 (!). Hey, it’s not acute, I can wait 😉
Nice to see you back!
Labour market problems (still an issue) was also my biggest driver for taking on ASD-based councelling, and while I am not sure whether the diagnosis in itself can help with that problem, I am considering if some sort of career councelling specialised in typical aspie issues or (better) direct placement with a few accomodations or perhaps just a bit of understanding and social flebility in regard to workplace norms – if that could help. I think it could. I think I’m quite resourceful, I could be a good resource if I could find a workplace setup that worked for me.
My current part time job works out and my employer is great – the best I have ever had, no doubt about that – but it is a casual job and not enough hours. I am struggling to pay my share of the bills all the time. I couldn’t even do more hours if I had the option, just a few hours of work of this type (interviewing, outgoing) drains me and typically prevent me from being substantially productive the rest of the day, so it doesn’t “pay off” in effort VS pay. Plus, it is very unpredictable so stressful that way. I never know how much I will earn in a period of time, or what I will experience.
What kind of labour market help are you having in mind, are you thinking of specific accomodations or support or just generally need understanding for how your mind works?
For some reason I can’t use my blogname for commenting and therefore I am using my real name. Therefore I won’t be specific in this forum. But I can tell you about two self-help books that you or others may find useful. The first is Asperger Syndrome Employment Workbook, by Roger N. Meyer. It requires a major effort, because you have to fill out several pages, but when you’re done with that, you will probably recognise a pattern (I did, at least). The last pages of the workbook are used for advise for yourself for use in future jobs.
The other book is called Asperger’s Syndrome Workplace Survival Guide, by Barbara Bissonnette. It’s a more traditional self-help book, and I knew most of what it said, before. But it’s a nice collection of advices…
I have actually read through the Asperger Syndrome Employment Workbook by Roger N. Meyer, although I haven’t carried out the instructions yet (but I have the book). I agree with you that it seems like an extremely useful concept. I actually purchased the office equipment as per Meyer’s instructions back in August or September, and the plan was to undertake the employment autobiography from September and actually use this blog to work through it chapter by chapter / section by section. That way I thought it would double up as book review series as well. I envisioned that it would be fantastic to read others’ employment autobiographies if it inspired others to do the same thing – there would be a lot to learn from that.
Anyway other things and timing side tracked that project, but it is still on the agenda. My plan is to do that and then (if I decide to do that) contact an agency that specialises in helping persons with asperger’s with employment, using the employment autobiography as a way to explain what my problem is really well and get help to work out a strategy. That is something I imagine could happen in 2014.
So I agree with you that book seems extremely useful. I don’t know Bissonette’s book. The way you describe it makes me think that it won’t be that useful to me… I think I pretty much know all the typical pieces of advice.
I have also read Aspergers on the Job by Rudy Simone, do you know that one? It is easy to read and have some useful pieces of advice, but nothing ground breaking.
The best of this type of self-help books that I have read is Living Independently on the Autism Spectrum by Lynne Soraya. It talks about job search, job interviews and how to function in a workplace, even how to get to work etc — looking at employment from many relevant angles. The book is not just about employment but about essential adulthood skills in general, so it addresses employment as just one of the many aspects of living an independent adult life, but it does so very well and thoroughly. The only downside is that American corporate culture may not work the same way as Danish or Australien corporate culture.
Hej igen Marie,
Jeg kom til at taenke paa… Hvis du allerede har gjort det (skrevet en arbejdsmarkeds autobiografi ved hjaelp af Aspergers Employment Handbook), kunne du taenke dig at lave en anonymiseret version/summering og poste den paa din blog? Saa linker jeg til den naar jeg laver min… Synergieffekt, Yay!
Det kunne vaere interessant at faa flere til at goere det samme, eller finde nogen der allerede har gjort det, det kunne udvikle sig til en god resource hvor man kan laere fra forskellige menneskers erfaringer og historie ved at starte paa en af disse blogs og saa foelge linknetvaerket til flere erfaringer.
Lidt ligesom Cynthia’s blog surveys, hvor der er en enorm compilation of erfaringer i relation til hvert emne (organiseret i nummer orden fordi fok svarer paa survey spoergsmaal) … det er genialt. I hendes tilfaelde er disse erfaringer samlet i kommentarsporet, men den samme effekt kan sagtens opnaas henover blogs. og det kunne vaere alletiders at have saadan en adgang til arbejdsmarkedshistorik organiseret efter en foruddefineret struktur (Meyer’s instruktioner), ligesom kommentarerne til Cynthia’s surveys har en struktur der goer det nemt at gaa igennnem en masse forskellige og faa en god kvalitativ fornemmelse for emnet (det er selvfoelgelig kun det samme hvad angaar foruddefineret struktur som princip – ellers er det en anden type insigt og stil).
Maaske skulle jeg have skrevet det paa engelsk… Du er ihvertfaldvelkommen til at svare paa engelsk.
hej igen Mados
Det er ret omstændeligt at poste svar her, så jeg tror jeg tager den over på min egen blog. Det er en supergod idé at skrive employment biography på bloggen, i hvert fald som opsummeringer. Der ligger en del bearbejdning i skriveprocessen. Jeg synes jeg så nogle mønstre jeg ikke havde været opmærksom på før. Jeg troede at mine udfordringer på arbejdsmarkedet var nye, men det viste sig, at jeg har oplevet nærmest identiske ting i hver eneste ansættelse jeg har haft. Jeg har haft næsten 20 år på arbejdsmarkedet som færdiguddannet, og starter til nytår på mit 9. job.
Employment biography bogen irriterede mig i begyndelsen, også fordi jeg skulle svare på nogen lidt intetsigende spørgsmål, især i starten. Men det er et rigtig godt kneb til at huske sine gamle jobs. Mens jeg sad og skrev hvor mange timer om ugen jeg arbejdede etc., kom jeg i tanke om en masse småting, som jeg havde glemt, men som var vigtige for historien.
Jeg lægger nogle referater ud lidt ad gangen, når jeg får tid. 🙂
Super god ide:-) Det glaeder jeg mig til at laese. At opdage moenstre, det er ogsaa hvad jeg haaber at faa ud af det.
Jeg kom saa langt som til at taelle alle de job jeg har haft… Det blev til 32! Jeg er 43 aar. Det er fordi jeg primaert har haft kortvarige smaajobs og tidsbestemte kontrakter, det er ikke fordi jeg er blevet fyret saa mange gange. Men stadig. Jeg har haft bestemte vanskeligheder i stort set hver eneste ansaettelse uanset industri, og disse har ogsaa forhindret mig i at tro paa en mere serioes karriere og soege mere hoejtloennede stilling…. (eller bare forstaa hvad de indebaerer og om jeg kan laere at leve op til det og hvordan man saelger sig selv til dem). Der er klart et moenster, selvom jeg ikke helt forstaar hvad det er der ikke virker.
Det boer jeg jo nok goere noget ved. Hvad er problemet? Er det noget nyt, eller har du oplevet det foerhen paa denne blog? Er du i stand til at sende en besked om hvad problemet er hvis det ikke dur at kommentere?
I really like the way you structured this discussion of the Asperger’s self-diagnosis to diagnosis and disclosure transition. Organizing a disclosure process sounds like a smart move, I find that informal discussion of the topic of autism gets negative, emotional reactions (a little on the dismissive side) from family and friends, which is of course not the outcome I was going for if I chose to bring it up. The fact that any such diagnosis is stigmatizing and comes across as an excuse makes starting conversations about it socially awkward. I like the way you structured the process of interpreting the diagnosis with hindsight as well, it’s more positive and cognition-oriented than some of the phases of chronic illness-recognition outlines I’ve seen before that emphasize things like grieving over whatever type of loss in functioning the illness represents. Frustration is an obvious factor in needing diagnosis, and I guess giving yourself permission to grieve over perceived losses in potential matters, but there are other ways of framing the process of gathering your wits while respecting your own feelings about such a transition.
I think it was a good idea to plan disclosure carefully, simply because the responses were important to me, so I wanted to tell it in a orderly, informative, matter of fact manner and provide some good information to counter all the confusing, self-contradicting, stereotype-based, fear-mongering or myth-building crap they may have heard of or will find with Google.
I have not experienced it as stigmatising to disclose the diagnosis to my family, they have overall responded positively. Social deficits are very stigmatising, even when they don’t have a name… People pick social isolation and “weirdness” up on their social radar and subtly back away… that is stigma. The diagnosis helps a bit with that stigma in relation to people who have seen me fail socially again and again through life… it provides an explanation, not an excuse.
Frustration isn’t the world I would use, more insecurity… a need for clarity… a need for closure in order to be able to move on.
Now I really feel like completing those drafts of the next posts (well, two are just attachments) right away… but it is now almost 21, which is the time for the evening routine that means “end of today”. (currently a shared routine with my husband, so I can’t even cheat… That would let him down)
I think you’re right, stigma is explanatory of tacit cues that are hard for me to pick up on, difficulty talking about AS has to do with stigma. I have had mixed luck bringing up AS with my family, some individuals very skeptical of the frame of reference and some more receptive. I’m really looking forward to your next posts! The clarity with which you describe this process or journey is very enlightening for me.
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