Yes, I’m sure

It’s taken me some time to get around to writing this. But I need to write it down, and do it well and concise and understandable and logical and open and as vulnerable as I can bring myself to be. Because this Tuesday I’m scheduled to have my last intake interview at the mental health clinic. Where they are going to tell me whether in their opinion I am autistic enough to get help. Or I should just accept whatever help they are willing to offer me, even if it’s treating the symptoms and not the cause. Or maybe I’m just a big crybaby who should go home and try harder.

To the person doing the interview,

When your colleague called me three weeks ago to tell me that the team wasn’t yet of one mind and that’s why you wanted to schedule another interview concentrating on my social interactions and the possibility of depression, I felt very angry. I understand that you want to be thorough in your approach and I support that. But I am very much afraid of not being taken seriously and not being listened to. That is why I am giving you this letter, instead of addressing these concerns verbally, because I have less trouble articulating myself on paper than I do in person, especially where emotions are concerned. And this is a very important and emotional subject to me. I hope you understand this. I would appreciate it if you read this letter through to the end before commenting, but please be assured that I will do my best to answer all questions and comments you might have afterwards.

Core problem

I am functioning at a reasonable level without any supports, except for the fact that I have been fired or otherwise let go from 8 of the 12 jobs I have held in the past 13 years. I have a university education (although without a degree), which has enabled me to work in professional or near-professional level jobs. I have never had formal or informal complaints from supervisors or coworkers about the quality of my work, meeting of deadlines, or other work-related issues.

Instead, in the cases where a reason was given for dismissing me, it was always along the lines of “stubborn”, “impossible to work with”, “doesn’t listen”, “undiplomatic”, “devious behaviour”, “untrustworthy”, and so on. This was never addressed during my employment, or not in such a way that I saw what was happening and could anticipate and address problems arising at work. Every time I’ve been dismissed, I was taken completely by surprise.

I do not have any problems or complaints in other areas of my life that pose an impairment to my current functioning.

Depression

I understand that you wish to talk about depression. I do believe this is a logical request related to the suicide attempt that I have listed on my intake form. However, as discussed with your colleague in the previous interviews, I do not have any complaints or feelings of depression. My attempt was over 15 years ago, and I haven’t had any suicidal or depressed feelings since. I do not feel it has any bearing on the core problem I have sketched in the paragraphs above. I hope you can see why I feel this way.

Other concerns

As mentioned, I don’t experience other significant impairments. However, there are several traits that I feel might be related to my core problem, based on the official diagnostic criteria for autism and keeping in mind specific development in not previously diagnosed adult women. “Often” in the below context means more than once every two months. “Occasionally” means around once or twice a year.

  • Social interaction
    • I often get told not to take everything literally
    • I often get told how naive I am
    • I often get told that I said something very rude without realising it
    • I often get told I sound authoritarian or overly sure of myself
    • I often get told my spoken and written language is overly correct and formal
    • I often have trouble identifying emotions in others
    • I occasionally get told off for inappropriate copying of other people’s words or mannerisms
    • I often get told to smile more
    • I often get told smiling at that particular moment was inappropriate
    • My mother often told me when I was a child that my face and posture were unresponsive
    • I am often able to repeat an entire conversation word for word, but have no idea what kind of facial expression the other participant(s) had during the conversation
    • I occasionally get confused about who is currently speaking when talking to several people in a noisy environment
    • I often get confused when someone asks me “how are you?”
    • I often have no idea how to maintain my side of a social, informal conversation that does not revolve around the exchange of pertinent information
    • People often have to tell me specifically that certain information is restricted or sensitive or private.
    • I often get told I come across as uninterested in how other people feel or what they say
    • I often get told I come across as intensely focused and interested if the subject of conversation matches my interests
    • I occasionally get told I appear obsessed with people in the early stages of a friendship or relationship
    • I often have trouble maintaining friendships
    • I often don’t realise someone doesn’t like me until someone else tells me
    • People often don’t laugh at my jokes
  • Restricted interests or behaviours
    • I have (and have had as a child) several intense interests that do not match peer or age appropriate interests
      • I never got the hang of colouring outside the lines. That was what the lines were for.
      • I liked calligraphy although I never really got the hang of it. I settled on typography instead. At age 9.
      • I created passports for all my Fabuland figurines so I’d know how they were related to each other. I included imagined genealogies and “passport photos” I’d cut out from toy catalogues.
      • Another hobby from around the age of 10 was drawing detailed floor plans of fictional houses.
      • On holiday, one of my favourite pastimes was to look up German license plates we saw on the road and see which city they came from. We had a list in the back of our German road atlas where I crossed off the ones we’d seen.
      • I collected rocks, shells, bits of pottery, stickers, postcards, pressed flowers, things with cats on them, colouring pencils and crayons, buttons, beads, coins, and stamps. I adopted my dad’s match book and sugar bag collections. I still collect stamps and still haven’t found the courage to get rid of my buttons and beads. Or my foreign coins, come to think of it.
      • I have had the entire script of “Monty Python’s Life of Brian” memorised since around the age of 13. Yes, I made that website. It’s horrible and I made it a few days after I taught myself HTML.
      • When we watched “I, Claudius” at school when I was 14, I made a complete genealogical tree listing all the characters and their relations to each other, for fun. I had read the book by Robert Graves (in English) but I also got Suetonius from the library to use as source material. I took the tree with me to class.
      • By age 16, I knew the lyrics to around 150 Beatles songs by heart, and to nearly all the songs Ella Fitzgerald has sung (and I can sing them, too).
      • When the student I was partnered up with – to do a tour of Bernini’s sculptures in Rome – forgot to make a photocopy of the notes I’d given him, I did an improvised tour instead by narrating the Greek myths the statues were inspired by. I’d watched The Storyteller a lot.
      • I am not a complete Star Trek geek. I just know the general storylines and names of all the main and most of the secondary characters – up to Voyager – and I’ve probably seen most episodes more than three times. I also like to read articles on Memory Alpha for fun.
      • At the age of 35, I methodically and systematically changed my fashion awareness. I bought over 50 pairs of shoes in less than 2 months to make sure I had a pair in every necessary colour and style. Those were not impulse buys to make myself feel good, or behaviour that I was unable to control. It was on purpose.
      • I often get referred to as “the walking encyclopaedia” for my love of trivia and extensive knowledge of facts and figures.
      • I know everything there is to know about ingredient lists and additives and cheap substitutes for proper food and will gladly bore the tits off anyone about nutrition.
      • I need to have my books sorted first by language, then by alphabet. No exceptions. I have held discussions with friends on how to properly organise my books.
      • I have taught myself electrical engineering.
      • I have taught myself HTML.
      • I have taught myself Italian. Although not fluently.
      • In many of the online games I play, I’ll be the one making the list of all the player coordinates on the map. Or the list of quest items my alliance needs to collect. Or the Excel sheets with formulas to track character development.
    • I often have trouble moving on from a project when it’s not “finished” or “perfect” yet
    • I love watching things spin, like the washing machine
    • A visual break in or deviancy from a pattern can make me feel physically uncomfortable. (Especially #3, #7, #14 and #19).
    • I am hyperreactive to auditory, tactile, olfactory and visual stimuli
      • For as long as I can remember, I have twirled or stroked my hair or stroked my own clothes to comfort myself.
      • I can’t sleep when there’s sand or crumbs in my bed. I’ve been told not to make such a fuss by others. Princess and the Pea style.
      • Occasionally the tags in my clothes, or a seam that rubs against my skin, can drive me crazy.
      • I can’t have a conversation while the TV is on or the radio is playing.
      • I often get laughed at for visibly jumping when something makes a loud or unexpected noise.
      • I don’t like bright directional light or overhead fluorescent light.
      • I get very uncomfortable with images shown in quick succession, or with lots of variation in orientation and tilt. Watching a Minecraft roller coaster video makes me feel ill.
      • I am very sensitive to strong artificial scents, like being able to smell other people’s laundry detergent and shampoo – not to mention perfume or aftershave (Axe/Lynx should be classed as a WMD in my opinion). I could do this even when I was smoking two packs of cigarettes a day. It’s worse now.
      • I used to be a very picky eater, now it’s only vinegar that makes me physically ill. And hard-boiled eggs.
      • Even as a baby I refused to drink cow’s milk. My mother weaned me off breastfeeding when I was around 10-12 months old and I haven’t drunk any milk since.
    • I have not-so-good spatial awareness and proprioception
    • I often get called clumsy
      • I drop things daily
      • I often cut my fingers or hit myself accidentally
      • I often walk into things
      • I often have bruises on my legs and arms that I don’t remember getting
      • I occasionally fall backwards without any particular reason
      • I have to be very careful when going up or down the stairs, I trip easily
    • I used to have problems with fine motor skills as a child
      • I have very good handwriting now, but I still hold my pen “the wrong way”

  • Other
    • I often do not hear someone speaking to me when I’m focused on an activity, like reading a book
    • I often have executive dysfunctions in the following areas
    • I’m often anxious about social interactions
    • I’m often overwhelmed by sensory input
    • I have strengths in the following areas:
      • Attention to detail (for example proofreading, I can spot a typo from a mile off)
      • Problem solving and analysis
      • Very good phone voice. I didn’t get a pleasant voice by accident. It takes concentration and practice.
      • Not letting angry customers “get to me”
      • Scripting customer interaction
      • Writing user manuals
      • Highly acute sense of fairness and honesty
      • Very loyal
      • Love to learn new things and apply knowledge in new ways
      • Getting along with programmers

In summary, I don’t feel very impaired by these traits, but I do think they shouldn’t be seen separately from my core problem.

47 thoughts on “Yes, I’m sure

  1. This is so well written. I think it really shows that you are taking this seriously and that you are being open, accurate, and honest. I sincerely hope the clinician you see can see that.

  2. I think all of your readers will recognize your Aspieness. Keeping my fingers crossed that the so-called ‘professionals’ will see it too.

    • I know that in Belgium and the Netherlands, Asperger’s Syndrome (AS) will continue to be an official diagnosis until the DSM-5 gets translated into Dutch (and French I presume, but not sure when that will be) somewhere in 2014.

      However, since the only clinical difference between Asperger’s and Autism is early language delays, I prefer Autism. Asperger’s does not make me “high functioning” more so than Autism (and besides, functioning labels are not very accurate anyway). And whenever I go mute (which is a thing likely to happen when I confront the diagnostician with this letter, hence why I wrote it all down in the first place), does that mean I’m not a proper Aspie because Aspies are so goddamn verbal? If I can lose my high functioning label at the drop of a hat, what do I have left to set myself apart from “real” Autism?

      Nothing. I am autistic. Autistic people are my tribe, my people. We’re all on the spectrum together. We get treated better or worse according to what others think of our functioning. Whether we are “normal” enough. And that’s simply wrong and I will never willingly be a party to that kind of treatment. I will not set myself apart by arbitrary definitions of “normality” that get defined by people who have no idea what it’s like to be autistic and who have been telling us our entire lives to SIMPLY TRY HARDER to fit in. Well, I’m 36 now, and it’s still not working.

      Sorry for the rant. I fully respect other people’s rights to call themselves Aspies or Aspergians or whatever feels right for them, especially people who have been diagnosed under DSM-IV. (Why is it always DSM-IV and DSM-5? That mix of roman and arabic numerals drives me nuts). Anyway. I just don’t want Aspie to become a synonym for “non-scary almost-normal autistic person”. And that’s why I choose to call myself autistic.

    • Sorry, I hope I didn’t make you feel as if I was targeting you specifically, by the way. The only trigger was that you assumed I was looking for an Asperger’s diagnosis, when in fact I am looking for an Autism diagnosis.

      • No harm done. :-) And sorry from my part too, I didn’t intend to offend you.

        I am quite new to the ASD-world and have noticed that Asperger and Autism are often used as synonyms, so I didn’t really think before I replied. After thinking it trough, though, I agree that Autism is more suitable as a diagnose, as all people on the spectrum have some basic characteristics in common.

        But… About your remark on loosing the ‘high functioning label’ when going mute… I’m using an example from the gited label here, because I’ve read more about it and I think this particular example fits here too. There has been a symposium on giftedness in the Netherlands (Hoogbegaafd, dat zie je zó!) where they came up with a definition of giftedness by joining the points of view of different gifted giftedness professionals. They only had one problem: What about prestation? If you can’t show to the ouside world that you are gifted, are you really gifted? Is giftedness all about who you are and how you experience the world or is it a way for others to label you?

        If you go mute, that doesn’t mean that all of a sudden your IQ drops and you are not at the high functioning side of the spectrum anymore; it means you are currently unable to show in which way you are autistic and an outsider may give you a different label.

        To resume, as the measurement methods for intelligence and verbal expression are very subjective and tied to the moment and therefore the observer may have the wrong perception, I think you are completely right to be looking for an Autism diagnose. When diagnosed, we should all be diagnosed with an Autism Spectrum Disorder, Autism in short. But you yourself can decide from the inside out which of the different types of Autism suits you best; if you usually are verbal (which I suppose you are, deducing from your ability to write long blog posts) you could say that you fit into the category of autist with Asperger Syndrome, I guess.

        I’d like to hear more of your point of view. I’m a complete Autism dummie, so I might now and then draw some conclusions that are completely wrong. I’m here to learn. Please have patience with me. ;-)

        • Yay! I’m glad you didn’t feel attacked. I’m still learning a lot about autism and the autistic blogging community every day and I’m happy to hear you’re curious and open to new insights! I hope you’ll be willing to teach me some things along the way as well!

          What you say about measurement methods being tied to the moment and observers maybe getting the wrong impression is actually precisely why I wrote this post. I’ve learned how to fit in SO WELL that it’s actually tripping me up in getting diagnosed. Because the one thing that getting fired so often has taught me? IS TO BECOME REALLY OUTSTANDING AT INTERVIEWS. I have had more job interviews than ALL of my family, friends, and coworkers COMBINED. Not kidding. So yeah, interviews are not really a good way to assess my functioning.

  3. I can relate to so many points on your list. In fact I’m sitting here chuckling rather nervously at many of them because I know them so well. I wanted to say thank you for taking the time to stop by my blog and following. It means a lot :)
    Can I ask you a question if it’s not too personal? You mention in your list several things that resonated a lot with me, like the poor spatial awareness and clumsiness, as well as what I can only assume are bouts of dizziness, also with not being able to tolerate bright fluorescent lights. Do you have hypermobile joints, as in do some or all of your joints invert or over-extend?

    • I’m not sure about hypermobile, although I’m definitely very flexible. I’ve started doing yoga again and the teacher also commented on the ease with which I executed some poses (although I had lots of trouble with some as well). My grandmother was a classic “refrigerator mother” (I adored her, but my father said she never showed him or his brother any maternal feelings) and she could bend her thumb so far back that it nearly touched the side of her hand.

      I don’t feel dizzy very often, although more often than most people I think? But the dizziness and cold sweats usually happen in classic hypotension situations (getting up too fast, yoga) so I’m not sure if that’s related to my spatial awareness.

      (Thank you for following by the way and welcome! Never stop asking questions. Questions are important). :)

      • I ask because many of the physical manifestations or symptoms you are list are classic attributes of someone with Ehlers-Danlos Syndrome/Hypermobility. The hypotension and the spatial awareness being two of many. The photosensitivity, your apparent natural flexibility, the mystery bruising, the problems with seeing fast moving images, and I’m hastening a guess that maybe you don’t deal with striped patterns too well. All it takes is for one joint to be more flexible than the others for EDS/H to be present. Hope I’m not intruding, just offering a different angle. :)

        • Yeah, I’ve read about that, thank you for offering some more information!

          I don’t think I’m extreme enough for that. Lots of sprained ankles but that’s about it. And I’m sort of operating on the idea that I want an overarching diagnosis first before doing all the comorbidity things, because I have this feeling I might end up with about 15 separate disorders otherwise. I have some of the symptoms for ADD, OCD, social anxiety, depression, bipolar disorder, borderline personality disorder, and schizophrenia as well, but not enough to meet the “significant impairment” criterium. So I’m trying to keep an open mind, but I’d rather only have autism to be honest. :P

        • Yes I know what you mean. It makes for a lot of headaches when the conditions begin mounting up. I was diagnosed with clinically severe OCD some years ago, and then the EDS/H shortly after, and since a barrage of associated conditions. I recently had to fill in a government health assessment questionnaire in order that I can still receive financial help as I’m unable to work, but the response boxes in the form just weren’t ample enough to fit in all of my conditions and symptoms. I ended up writing a lengthy document to accommodate it all, and attaching it. I’ve yet to see what the outcome of that is. But I hope that all goes well for you and that you get what you need. Being very open and concise about all your different symptoms is definitely the best approach, that way no stone is left unturned and everything can be taken into consideration. :)

        • I always say, if it doesn’t impair my day-to-day functioning, then it’s not a disorder or a disease or a syndrome at all. I spend a lot of time online. It’s not an internet addiction until I skip work or appointments in order to be online. That’s the difference.

          I mean, everyone will probably recognise several things here, which I’ve based on the clinical descriptions in the DSM. That’s what gives rise to that awful phrase “but everyone is a little bit autistic really”. Sure, but does it impair you? Does it get you fired from most of the jobs you’ve had, because your social skills are that bad? That’s the difference.

  4. You left “well organized” off your list! This is a great letter. I hope they listen and give it the attention it deserves because you’ve made a great case for ASD. Fingers and toes crossed for you.

    • Haha, well organised when I really force myself to be! This list took me 4 hours to write (and countless handwritten drafts in the MONTHS before that). Had to keep checking whether my things fit the diagnostic criteria (which was a really good tip from Mados by the way). Thanks for the compliment!

  5. That is an excellent, very well organised list.

    Also, a lot of it is like looking into a mirror! Except I’m not a walking encyclopedia or can memorise scripts and have certainly not taught myself electrical engineering or anything like that … but the sensory and social issues and many of the strengths sounds very similar.

    Why are the sensory issues listed under “Restricted interests or behaviours”?

    I love Monty Python’s Life of Brian (basically the rest of Monty Python’s productions as well) and that you wrote out the script/record and put it on a website…. Very cool:-)

    And I think you are right. Your listed points combine into what sounds like an autistic profile, and I certainly think the points are relevant pieces in the puzzle of your core problem.

    However, they may focus on you saying “these things do not count as impairments” et.c several times and be like “Ok that’s all cool then, don’t fix what isn’t broken”. Their focus may be “What does she want from us, and why?” So they may want to know how a diagnosis would help you with your core problem, since you basically say that core problem is your only bad problem and the reason you contact them. They may look for the practical function of a diagnosis, such as: what do you need… Social skill classes? Career counseling specialising in persons with Asperger’s Syndrome? and how will a diagnosis give you that so that you can better maintain yourself in work.

    So maybe a good approach could be to have a list of the things you need and where a diagnosis would help you get that particular support to combine with your list.

    • Oh, the sensory issues are under that heading because DSM-5 put them there. Doesn’t make sense to me either. :P

      I think I’m better off finding my own supports, but an official diagnosis will be important if for instance employers refuse to acknowledge some of my needs. I’m still the person who can do all the stuff they hired me to do, “capable of dealing with loud noises” is not a part of my job description. So with a diagnosis I can actually point that out and make a case out of it. One practical instance for example is my bank who “punishes” me for every overdraft by blocking my direct debit for 4 months. Overdraft is bad but once I’ve fixed that, there shouldn’t be any additional hurdles. And taking away my direct debit severely impacts my life because I need it to pay my bills on time, it’s my main crutch. I’m still clearing away the debt debris from my last overdraft in January.

      • Basically what I wanted to say is that with an official diagnosis, I can tell them that for an autistic person the “punishment” and the extremely severe consequences it has is in no way proportionate to the “offense”. So hopefully I can not only self-advocate with my bank, but do some activisty stuff as well.

        • but an official diagnosis will be important if for instance employers refuse to acknowledge some of my needs. I’m still the person who can do all the stuff they hired me to do, “capable of dealing with loud noises” is not a part of my job description. So with a diagnosis I can actually point that out and make a case out of it.

          OK. That may work, I would just be very cautious to not antagonise the employer though… To demanding accommodations and threaten with making a case of it with a diagnosis in hand may make them vary of you so that they actually would rather not have you in their company… thinking that you could start a case any time about something you needed that would cost them time, effort and/or money… that would probably worsen your core problem as you have described it elsewhere.

          With the bank, I can’t see the relevance of an autism diagnosis for overdrafts, and definitely not something a bank would need to recognise. Also, it sounds like an extreme overdraft penalty your bank has, it is obviously counter-productive to block people’s direct debits for 4 months. That does not even make sense. Are all banks in Holland like that? Otherwise you could just change bank.

        • Protection. Not for use except in case of emergency.

          And not for the overdraft. Overdraft means you don’t have money. That’s logical. What is not logical is not being able to use direct debit even when you DO have the money. That’s the punishment. And it’s disproportionate.

          And I’m not even sure I would use a diagnosis for all of that I’m just flailing about for something that makes sense and that would give me just a little bit more credibility even though the more I say the more it sounds exactly like what my parents are scoffing at it’s not a get out of jail free card but I just want people to LISTEN and take me seriously and that’s never going to happen unless I have proof.

          That’s about it. I think.

    • OK, you were 100% on the mark with your idea that they might focus on “these things do not count as impairments”! The new woman I talked with today seemed open to the idea of autism, but basically hinted that I would probably not count as impaired enough to qualify. So my entire strategy of self-reliance and devising my own supports might come back to bite me on the arse now. :P

      Will probably do a post on it once I’ve let my thoughts percolate a bit but wanted to tell you that you were right to warn me. :)

      • Thank you for the update:-)

        Your strategy of self-reliance is good and has (highly likely) given you a much better and more productive life than you would have had otherwise.

        It is just that from their perspective, they have a task description and limited resources which they obviously want to allocate to people who need help most . For you a diagnosis is about identity and validation and belonging in a subculture (please correct me if I am wrong). None of those “soft” parameters would mean anything for mental health professionals with a limited budget and “hard parameter” descriptions to operate within. Basically the real reason you want the diagnosis is probably not valid to them, and the reasons they find valid are lingering in the fringes of what you consider the core matter.

        I think there was a hint in their focus on depression…

        (Yay I am good at perspective taking, no!)

        I know this is very frustrating for you, but at the core of it is a very good sign! That you’ve done really well working around your issues and building a life that suits you and where you thrive. You are basically having an autistic personality type without many of the really serious life-wrecking downsides and you also seems like a person who people like and connect with easily. That is all very good.

        Has it been like that most of the way through, or have you find it harder to function earlier in your life? You mentioned that you have saw a therapist in the past, was that a short temporary crisis or just the top of an iceberg. (my apology if I’m being too nosy… just let me know if that is so)

        • I think it’s mostly how much energy it takes to keep functioning on this level and how I’m absolutely TERRIFIED of anyone figuring out how bad it can be. It’s like balancing on a knife edge.

          But you’re right, it is a good sign at the core. It’s probably going to be the same story as with the therapist I saw (as a condition for my release from hospital after my suicide attempt 15 years ago). “You know what you need to do and how to solve things better than I do. I can’t help you.”

          Oh well. I’m used to doing without the support. It’s stressful but I’ve managed so far and I’ll continue to manage, one way or another.

          My main plan for work related issues was to explain to my supervisors about the things I have trouble with, like smiling at the wrong times and sounding overly sure of myself etc. But that depended on me being able to say I am autistic. I can’t say I’m autistic when I’m not. And there’s something inside me that says I need to give a damn good reason for not being able to do those things. So that’s why I’m a bit stuck on the work front. This all needs to go into a new post.

        • My main plan for work related issues was to explain to my supervisors about the things I have trouble with, like smiling at the wrong times and sounding overly sure of myself etc. But that depended on me being able to say I am autistic.

          That is a good reason. Did you explain that to the people who did the diagnostic interview?

          I can’t say I’m autistic when I’m not.

          I think you are autistic, based on your list above and your childhood footage and some of the things you have written. I am not a professional of course, but I am quite good at patterns.

          What they say doesn’t make you autistic or not autistic. A diagnosis would give you “evidence” to show to support your explanation at work and I can see how that could be helpful, but it doesn’t change who you are. Obviously the core of the matter – whether your mind operate in an autistic way, with all its aspects both strengths and problems – is about what you are. But what the health professionals focus on is degree of impairment – Their focus is on negative aspects only because that is what health profs are supposed to do – fix problems. Where there is no problem they’ll see themselves as irrelevant for the matter and that they should focus their energy elsewhere.

          I think it’s mostly how much energy it takes to keep functioning on this level and how I’m absolutely TERRIFIED of anyone figuring out how bad it can be. It’s like balancing on a knife edge.

          I very much get that… It is sort of unfair. Like you work extremely hard to climb trees just to be like an average monkey when you are actually a fish and not designed to climb trees!

    • Also, reading your reply to Goele above, I realise I might trigger the “Aspergers” button as well. I’m not much into the details of that. I don’t perceive any significant difference between Aspergers/Pervasive Developmental Disorder/High-Functioning Autism et.c., but I can see from your perspective that you do, and respect that.

      • I used to see all the definitions as equal too until I realised NT people felt far more comfortable with the term Asperger’s. And I’m a prodder. I like making people uncomfortable when that forces them to re-evaluate their prejudice and bias and unconscious thoughts. In short, I like making people think. And that’s why I stopped saying Asperger’s and starting saying “I’m autistic”. But only as it applies to me. Aspergers and HFA and PDD-NOS, we’re all in the same spectrum boat together and the sea is very wild and we need each other to keep us from drowning.

        • That is not my experience. Everything I have heard about Aspergers offline (not much) has been very negative. That has been from the few persons I have encountered who have had any exposure to persons with aspergers who they knew had it (not counting in a kid I know here in Australia, because in his case no one says he has it I just know he does) – my uncle and aunt about my uncle’s former colleague who was sacked after outrageous stalking behaviour and then diagnosed with aspergers, a childhood friend who said she didn’t see her brother much any more because of the behaviour of his young son with aspergers, and the staff member of a class for aspie kids on a school where I was cleaning long ago saying that most of the aspie kids would go on to live miserable lonely, disorganised lives when they finished school and were on their own (his point was that they needed ongoing support which they wouldn’t get).

          I think Aspergers, and the nickname aspie, even if it stops being an official diagnosis, is the most accurate description of persons in the “high” end of the autism spectrum where many are able to hit at least some of the Normality milestones such as job, education (with or without support), get married, have kids, and look normal in the eyes of society at least some of the time, but with social issues (and sensory and others … but these are usually not perceived by the surroundings). The social stir-up it causes when typical people’s social expectations to someone who appear normal but isn’t meet the person’s failure to act in typical ways, is unique for aspergers I believe… and probably the source of many crises, meltdowns, depressions, anxiety, getting sacked, dropping out, being ostracised and bullied and low self-esteem.

          I have worked with so called low functioning teenagers who can’t speak wear diaper et.c. and I don’t think many would be able to tell the difference between NT and Aspergers; both are too distant from the reality they live in. They don’t have get opportunities aspies may get, but they most likely also don’t face the same excruciatingly high social expectations from society and self-expectations to meet normal milestones.

          I know it is politically popular to say that we are all in the same boat, but the view and the opportunities in the opposite ends of that boat are vastly different and I think it is useful to have language to label that reality difference. Cancelling language for political agenda reasons isn’t useful IMO.

        • Thank you very much:-) I appreciate your words but it isn’t really my kind of topic. It may take me straight into the autism activism/politics debates where I don’t want to be. I see it as an arena that is circling around itself and discussing smaller and smaller issues, like what words should and should not be used on the arena, while gradually spinning further and further away from the surrounding world. Getting lost in details! Loosing sight of the forest and seeing only trees (or labels on trees)… Ironically:-)

  6. Pingback: Lists are an autistic thing, but they’re not an impairment | autisticook

  7. Wow, this is incredible! I’ve never felt so completely understood in my life. I’ve been struggling to find help for ever a year now, and with horrible consequences (7 hospitals and jail). I’ve been screamed at, called names, tied down, and shot full of drugs. All because each time I walk into a hospital I get so freaked out (lights, sirens, uniforms, Nurse Ratched, etc.) that I become nonverbal and confused. They charged me with criminal trespassing on account of being “un-cooperative.” I’ve thought of writing notes, but I thought they’d accuse me of storytelling – lying – and throw me out.

    Yesterday was the first day I was taken seriously. The last week for me has been filled with communications and meltdowns in the local mental health clinic. I finally called their 24 hr crisis line – which happens to be staffed by the same people as the clinic! Turns out,not having to look at a face meant I was actually able to explain myself for once. The on-call therapist was horrified at how completely destructive their “help” had been, and fully supportive of my seeking a diagnosis.

    After I’m diagnosed and able to get some of my symptoms under control, I want to move on to start fighting for those who are overlooked and suffering in mental hospitals. I’m confused as to why they have to build handi-cap ramps for folks in wheelchairs and make braille signs for blind folks, but they don’t have any sort of mental health evaluation that is accessible to those of us who have a hard time communicating face-to-face.

    Cheers, Sweetheart. Here’s to all those nights you and I laid awake fuming over what we should have said. If we have to suffer through the feeling of being completely paralyzed any time our heart rate exceeds 90bpm, we should at least get some freaking BENEFITS for it!

    • I am so glad to hear that you’re finally being taken seriously! People never seem to listen to anything not said in THEIR language. You need to learn their language first before being able to ask for help. Which is a bit of a problem if you’re non-verbal. So yes, I agree on creating a higher awareness of what accommodations can be made to make health care more accessible. It’s really not that hard.

      Good luck with your evaluation!

  8. Isn’t it unbelievable how hard you have to work to make people see this, when it is SO clear? After I got my diagnosis, I realized that I get randomly asked, “Are you okay?” ALL THE TIME. Evidently I don’t compose my face the way I’m supposed to so people think something is wrong. I had never noticed that before.

  9. Pingback: Lists on Lists and Lists of Lists | Notes On Crazy

  10. I could have written this almost word for word with a few changes. Like for me it was 1940 movies and Judy Garland and Elvis songs as well as the Beatles. This was refreshing to read after my recent experience that you wrote back to me on Musings of an Aspie. Thank you for your refreshing perspective! This was encouraging to read. Sometimes I get really tired of self advocating. I was going to pursue self advocacy with this phyciatrist and write a list like this but I really dont trust her and I think you are right that I need to run. I just wont probably ever get the actual papers. Ah well. This was great! I appreciated the list and your strong advocacy!

    • You sounded like you could use some positive affirmation. I’m so glad my list could help you with that! It’s absolutely dreadful to know that so many of us are stuck having to educate the professionals, instead of them helping us.

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