When I was just a little girl

It’s taken me a few months to gather my thoughts sufficiently to be able to write about this.

In September 2013 I was at the mental health clinic with my mother, getting interviewed on my childhood behaviours. This part of the adult autism diagnosis refers specifically to the section in the DSM-5 that says:

“Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

I felt incredibly nervous about this part of the diagnosis.

Mostly because I knew I didn’t exhibit many symptoms in childhood. Sure, I always had hobbies that I was intensely occupied with, and that weren’t very typical of other children my age, but overall I just seemed a shy, studious, slightly naive but happy young girl. My parents were very supportive of me and my interests and never made me socialise with others if I didn’t feel like it. It was perfectly acceptable in our family to spend most of Christmas Day reading the books we had received as presents.

© Grecaud Paul - Fotolia.com

© Grecaud Paul – Fotolia.com

My mother was nervous about the interview too. I noticed she was clutching her hands so hard that her knuckles were turning white. Up until that point, the therapist had addressed most of her questions to my mother, so I’d kept quiet and let my mother do the talking. But she wasn’t doing much talking. So when I saw her hands, I took control.

The questionnaire

Maybe the questionnaire had set us both up for feeling a bit unsettled about this part of the diagnosis. It was obviously meant for the diagnosis of children, with some half-hearted attempts to make it suitable for adults. And by half-hearted, I mean questions like:

As a child [section heading says 0-5 years old], did he look at people (meet their eyes) when they were talking to him?

  • Never or rarely
  • Only with parents
  • Usually did

And at a later age? [emphasis mine]

Some of the questions did indicate that they were meant to cover specific ages, like 0 to 4 years old, 1 to 5 years old, or 4 “and older”, but none of the questions specified HOW MUCH older. Not even adolescence was mentioned specifically.

I had planned to go through the questionnaire together with my mother, to explain things and to give feedback on her recollections. But about halfway through reading through the questions, my mother gave up. She said they were such leading questions that they were making her feel anxious and she couldn’t remember all those things about my childhood anyway. We did spend some time reminiscing about my childhood and even getting out my baby book, so that was fun. But filling out the actual questionnaire wasn’t going to happen with me there.

She brought the filled out questionnaire with her to the interview, so I had about 2 minutes to scan through her answers before the therapist came in. She’d basically answered “my child was normal” to every single question.

As a child, did he feel very afraid or anxious?

  • Normal
  • Yes, about strangers or specific people
  • Yes, about animals, noises, or (mechanical) objects
  • No, showed no fear or sense of danger

Yep, they used the word normal.

The interview

Of course, it’s been a while since the interview, so my recollection is a bit hazy. There were a lot of questions about how I interacted with others. Like, did I have any friends (yes, I did). Did I get invited for birthday parties (my mum’s answer was, “We didn’t do birthday parties”, ha!). Did I come across as bossy or controlling when playing with other kids (my mum ran into my nursery teacher a few days before the interview, and even she remembered how much I enjoyed “playing teacher”. I was in nursery school in 1981). Things like that.

Me taking control of the interview meant that I started answering the questions with how I remembered things. Like playing with other kids but not knowing when it was OK to join in. Constantly feeling puzzled by the behaviour of other kids. A very vivid memory about not understanding when someone’s joking or serious. (Still makes me cringe to remember that: I’d given a presentation in class about windmills, and a classmate asked me how windmills actually worked. I thought he was joking, so I gave an extremely scathing reply. And got reprimanded by the teacher for making the kid look ridiculous, because it was a serious question. Ouch).

My mother started relaxing a bit more when I was the one doing most of the talking, and started adding and elaborating on my recollections as well. It got to the point where it was mostly a conversation between me and her, with the therapist desperately trying to keep us on subject and within the time limit. That was fun.

The diagnosis

Of course, with my mother seeing me as normal and that attitude colouring all of her replies, I wasn’t feeling all too sure about the conclusions the therapist would draw from the interview and the questionnaire. I knew my diagnosis would hinge on autistic traits being present in childhood.

To counteract the “normal”, I got in touch with the therapist the day after and explained a bit about my family. About how most of my family members exhibit the same traits as I have. How within my family, I am indeed our kind of normal. Which, I can tell you, didn’t seem all that normal to others who got introduced to our family. My youngest brother even made a point of warning friends who stayed for sleepovers that they shouldn’t pay attention to anything happening at breakfast, because, in his words, “They all like to have these discussions, you know?”

© Alon Brik | Dreamstime.com

The fact that I grew up in such a family meant that I never had to explain why I’d rather read books than play football. That it was perfectly OK to hate crowds. My parents never told me that it was my own fault for getting bullied because I should try harder to behave in a certain way; they encouraged me to remain true to myself and to take pride in my differences. They never expected me to read between the lines, to understand things instinctively just because “everyone knows how to do that”. My parents provided me with the support I needed to function in an overwhelming world.

My diagnosis took this information into account. Yay!

From the official diagnostic report:

Judging by early childhood, there are very few indications of an autism spectrum disorder, although there are several examples of not understanding social interaction as a child. There are several explanations for the lack of symptoms in childhood, such as the close ties within the family and more family members possibly having undiagnosed autism spectrum disorders. For example, patient indicates that it is very normal in her family to talk in a formal, old-fashioned way (they often talked about scientific subjects and regularly consulted the encyclopedia during discussions).

Even though in the Netherlands the DSM-5 has not yet been adopted, the idea that “symptoms may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life” has obviously been accepted. This will hopefully help others get diagnosed. Others who, like me, don’t seem all that autistic until you realise how many supports they have in place.

Advertisements

53 thoughts on “When I was just a little girl

  1. By the way, if anyone else is feeling nervous about getting diagnosed because of this, I can also put up a copy of the questionnaire (flawed though it may be). Just let me know if you’re interested.

  2. Re: joking or serious: a looot of times I got in trouble for for replying to a serious question as if it was a joke or got made fun of for taking a joke seriously.

    • For me, the moment has probably etched itself into my memory because it was the teacher who cut me short. I thought of myself as a good girl who never did anything wrong and who was loved by all my teachers, and this shattered that illusion. But I’m pretty sure it happened with peers all the time. Because I still get it wrong half the damn time even as an adult.

      • Yeah, I had a few of those moments. Like the time a teacher took me aside and told me to go along with what the other kids in the group wanted the project to be (I was known as prickly and bossy and oftentimes group projects would see me in full tearful, storm-out-of-the-room meltdown in middle school, tho other kids just thought I was crazy and teachers just thought I was an immature control-freak), so I did, and then got yelled at because I should have told the other kids to pick something more serious and I should have known it was inappropriate.

        It was one of those, “But I just did what you told me to!” moments.

  3. OH. MY. GOD.

    YES.

    I just finally got my officiation, btw. 🙂 She said if Aspergers still existed, I would fall under that category, but that Autism Spectrum Disorder, Level 1 was what she had to give me.

    I remember sitting down to do my own work. See, I am a list maker. When I went to get assessed, I knew that already the cards were kind of stacked against me. I am a female and not a kid. Not a behavior problem. Never been committed or treated for any sort of long term mental health issue. Have a (mostly) normal work history.

    When I sat with my mom to make up my fancy “welcome packet” to give to my therapist for assessment, I at first had a hard time with my mom seeing anything as abnormal. For one, my mom was that mom that loved each of her kids individually. She never compared us and guided us in a way that was distinctly molded to each of our individual needs (my mom is incredible for how ahead of her time she really was with parenting). But you see, my mom came from an old fashioned household where she was one of 8 kids. The family only went to private schools and my grandfather forbid outside socialization (very strict upbringing). They were very poor despite going to a private school (all their money went to private schooling to “protect” the kids). So my mom’s idea of normal is biased as every single one of her brothers and sisters emerged from that household with some sort of mental illness from social or general anxiety to schizophrenia, all the way to serious depressive tendencies ending in several suicides or suicide attempts. Knowing what I know now, my dad is where I get *my* spectrum tendencies from. So he wasn’t much help for trying to figure out “normal.”

    I asked my mom questions about my behaviors and she had a hard time understanding that just because the behaviors weren’t problematic, didn’t mean they weren’t symptomatic. I pointed out a *lot* of my own nuanced but present traits and at first she was a little skeptical. It was hard for her to “pathologize” my behavior because she saw (and lovingly sees) nothing pathological about my person. It took her about a month and several readings and watching my son (diagnosed) more closely to switch her lens and see what was really there. Suddenly, she was vomiting child hood quirks of mine.

    But I also knew as my assessing psychologist was asking me questions about my childhood, like did I get in trouble a lot, did I have any learning disorders, did I find myself bullied regularly, did I have any trouble making friends and the answer to all of the above is a resounding “no.” No, I was not a troubled kid (in fact, my mom later confirmed I was an extremely PASSIVE, easy-going kid, which is a rarely talked about trait in autism symptomology). No, I didn’t have any learning disorders; quite the opposite–I was hyperlexic, gifted, extremely intelligent and LOVED school and learning and had a burning curiosity. No, I did not find myself bullied more than the usual; despite always knowing I was somehow different, I secretly harbored a bit of a snobby streak because I LOVED my differences. I LOVED who I was (and am) and I fiercely defended my sense of self and my esteem. I had a couple of folks *try* to bully me and they were quickly taken to task. Not all spectrumites have low self-esteem and for this, I thank my mom for imbuing an early understanding that loving the self and understanding our own value was the single most important thing we needed to learn in life and that in doing so the rest of the important learning would follow. And to this day, I have a cache of equally quirky, close-to-lifelong friends who have always loved me for who I am, including my odd duck tendencies and my Mother Hen style.

    It was the smaller things, like the fact that I would ride my bike in circles and sing or hum–FOR HOURS in a driveway/yard large enough to enjoy plenty of straight path riding. It was the fact that I would spend entire DAYS on a tree swing and script every single scenario I could possibly imagine myself in (something written off as having a “magnificent imagination,” and “sense of drive,” since some of those things were being a Peace Prize Winner, or a child prodigy who solves the riddle of cancer). I collected LOTS of things. And took good care of them. It was just saw as a “preference” of mine. I had an impressive drive to do anything I wanted. “Determined” I was called and lauded for my ability to buckle down and master *whatever* I put my mind to.

    But no one noticed the fact that I didn’t brush my hair, that I had “bird nests” that would take my mom hours to work through with conditioner after a few weeks of sporting them. Or that I REFUSED to brush my teeth until fourth grade. Or that I dressed like a hobo all the time. Or that I THRIVED in my ordered disorder (which looks JUST like the pics that you posted a while back on the subject of EF and cleaning, lol). At five, six, even ten, these things weren’t important. Making straight A’s, never getting in trouble, following the rules, being happy…these were important.

    Autisticook, I am so glad I found your blog! You have quickly moved into the realm of favorites because I relate so much to what you post!

    • “Just because the behaviors weren’t problematic, didn’t mean they weren’t symptomatic.” This!

      I recognise so much of what you’re describing as well. Including the snobbery! I was very aware of the fact that I was more intelligent than most people in school, and I privately made fun of the people who wouldn’t give me even a single glance except when they needed me to help them out with homework. I thought that was pathetic, even though it also kind of hurt to not be appreciated for my awesome personality. 😛

      I’m just as glad that you’re enjoying my writing and commenting on it! It’s so wonderful to connect with people like you who have the same experiences as I do.

    • Wait… that is so similar to me. Spending hours and ours and days on a swing. And my family was specific and strange and lovely and independent. So things were normal to me. And the organized disorder.

      And I also never brushed my hair. My parents had a rule that I wasn’t allowed to leave the house without brushing my hair, long enough that my several-years-younger neighbor still remembers it. Because apparently it was a significantly difficult matter. Anyway.

      I just want to say me too! me too! me too! Hello!

      • Even the things where they said that I would have been diagnosed with Aspergers if it still existed (but then they were really confused because it was new DSM and then there was no specific conclusion.)

        • When I was 10 or even 12, my parents put on my list of “things i had to do to get my pocketmoney” that i had to check my appearance in the mirror every morning before going to school (otherwise i’d have my collar flipped in or my ponytail off centre, or whatever).

      • My mother kept my hair fairly short, probably because it was less of a hassle that way. I can’t remember brushing being an issue. Washing my hair, on the other hand… drama.

        • Brushing hair wasn’t an issue — it was kept short. Brushing teeth: major issues with the sensations and with the strong taste of toothpaste. I didn’t brush my teeth until I was aged about 9. The other thing I had issues with was rubbing with a towel to dry myself after a bath: it was physically painful and triggered redness/weals that itched like crazy. Even when I went swimming I would just stand around until I was dry enough to dress. I still can’t stand the clinginess of wet clothes, so I had to remain unclothed until I was dry.

        • I had the exact same issue with towels (and wet clothes, by the way). That’s one of the areas where my mother simply didn’t understand or want to understand my sensory sensitivities. She thought I was being a drama queen about getting toweled dry. If I was allowed to do it myself, I patted myself dry, which worked a lot better… but my mum always got annoyed with how long it took me and usually grabbed the towel to rub me dry the rest of the way. Ouch.

        • I remember when my mother would towel me dry: it felt as if my skin was being rubbed with a cheese grater and I would scream and cry! I don’t think she understood how uncomfortable it felt, so yeah, drama queen would have fit me too. I can use a towel now but it has to be soft and I pat rather than rub myself dry.

        • Brushing my hair is why I shaved my head at 13 (my mother wouldn’t let me cut it short, until she made the mistake of sending me to the hair dresser’s alone and telling me I could get “any” hair cut I wanted. Bald it was! Oh, she was furious! My father thought it was hilarious) and, with the exception of two years where I grew it out for charity, it hasn’t been longer than about chin-length since.

          I learned how to wash my own hair at 4 because I hated the way my parents did it. I hated tap water in my eyes (it stings!) and having water run over my mouth triggered a sensation of choking for me. So.. drama whenever they insisted on doing it for me for speed.

          Also couldn’t stand bubblegum toothpaste – graduated to adult toothpaste at 3. Whenever dentists or family friends assumed I’d want bubblegum, moar drama. Even the smell of bubblegum flavors make me gag.

        • My hair got cut short too because I kept chewing on it, so the only way to keep me from doing that was to cut it off. But it still got horrifically knotted and unbrushed.

  4. Wow, I resonate with so much of this. I was worried about how my mom would portray my childhood too. I took a similar tactic that you did…I chimed in a lot during the interview about what I remember experiencing. My mom didn’t seem to have the greatest memory about my childhood in general, probably because I have 5 younger siblings and since I was well behaved and didn’t get into trouble, she didn’t always pay that much attention to me. There was always a baby who needed tending, etc. But the fact is, I really didn’t have a ton of overt Autism symptoms as a child. Thankfully my psychologist was understanding about what some of the reasons for this could be. One line in my report makes me think of your report: “…the structure of her home and family life along with the child-centered schooling she experienced help mask some of her struggles.” So I was glad that my psychologist realized that the supports I had were masking the symptoms…it didn’t mean that they weren’t there. Oh yeah, and the way my family relates, talks, interacts is pretty atypical too. My siblings always forewarn their new friends every time they come over for the first time. 😛

    • I see a lot of that in the stories of women on the spectrum, that because they’re generally quiet and well-behaved, the fact that they’re struggling with things gets overlooked. Acting out usually gets you a diagnosis a lot sooner. (Not always helpful, but that’s a different story).

      It’s good to hear that your psychologist reached the same conclusion as mine. Hopefully this awareness among professionals will become more widespread, since more and more adults are discovering they’re autistic – which obviously means their symptoms were masked or missed as a child, not that the symptoms weren’t there.

      Funny how your siblings do the same thing my brother does!

      • This is all really reassuring – I’m waiting for a date for my assessment (I’m 41). I don’tremember having any particular Aspie traits as a kid (other than struggling to socialise) – I kept to myself as a preference, was really quiet and kept my head down and mouth shut. My mum was quite controlling and I’ve not mentioned any of this to her because I know she wouldn’t believe I could be Aspie (she’s very anti-labels). And she’s actually like me in many ways but doesn’t recognise it at all. Anyway, what I’m trying to say is that it’s great to read that others have similar sorts of feelings and happy endings 🙂

        • Glad to hear that you feel reassured by other people’s experiences! I think this is one of the most powerful things the internet has brought us, knowing that others are going through the same thing. Good luck with your assessment!

  5. I keep starting to type and then deleting what I wrote. I don’t know what to say. I have always known that I didn’t operate like others, in fact not one but three psycho-educational assessments were done when I was a child to try to figure out what my “Problem” (their word not mine) was.The first two showed me to be dead average (although the 1991 psychologist did notice some of what he called my “coping mechanisms”. Talking to myself and mild stimming.) But even though dyslexia, ADHD and anxiety issues were brought up, no one ever explored the idea that I might be autistic. Last night I typed up a list of every odd, not quite right, weird, off, thing about my childhood and elementary school career and it read like a horror story.

    (Triggers. Skip to the next paragraph) It read like one of the worst bullying stories that you hear in the media. The girls would spray me with perfume when I wasn’t looking the boys put me in lockers and garbage cans. I cried last night when I found my self typing some of these things and some worse things. It was weird to attach it all to me. When those years were condensed they sounded horrible. I was frequently a miserable overstimulated mess. The perfume thing was the worst.

    I dripped all over my keyboard last night. I couldn’t stop crying.

    But my Mum never saw me as odd. She knew I needed help and tried to get it for me but she had no problem with the fact that my brother would only eat beige food and that I had texture issues around beef, pork, and wouldn’t eat eggs if I could see them wiggle. She had a policy that she wasn’t going to fight about food. She had better things to spend her energy on so if she made a stir fry for dinner it wasn’t a problem if all I ate was the broccoli and all my brother ate was a pile of rice with butter on it. She didn’t mind that I needed several days warning to mentally prepare for any changes to my routine/environment. She liked rocking too.

    When I was thirteen she pulled me out of school and let me bum around for a couple of years and it was a year and a half into that period when the third psycho-educational assessment was done and after all of that time to decompress the third assessment found me to be intellectually gifted. Most of my scores were in the nineties with the exception of ‘processing speed’ and ‘freedom from distractability’ I was in the 9th and 12th percentiles respectively in those. Autism didn’t come up but they did try to pin an ADHD diagnosis on me but I didn’t qualify.

    But the thing is that I was a pretty little girl with tidy hair and flowered dresses. For me flowers, vintage jewelry, all things pretty =trains. I wear dresses because I can’t stand the feel of seams on my inner thighs and I can’t stand the feel of tangles in my hair. For me hair brushing is a stim and I’d long since learned that everyone treats you like an insane village simpleton if you repeat the last five words of every sentence three times before you can go on to the next one. All of the symptoms of autism have always been there and no one looked for them.

    Sorry about the rant.
    I’m in the middle of seeking diagnosis and … well… your post hit close to home.

    and I love your blog too…

    and I feel like I’m not crazy, stupid, slow, odd, neurotic, anymore.

    • Please don’t say sorry, I love long comments!

      Wiggly eggs are so bad. I’m glad to hear your mother didn’t make an issue out of it. Mine did. It was a constant fight and I’m glad I got out of it by learning how to cook for myself.

      The bullying sounds awful. I’m so sorry that happened to you. And there’s really no “getting over” things like that. People truly don’t seem to understand what an impact bullying has, even as an adult, unless you’ve lived through it yourself.

    • Solar flares, the history of beer brewing, who can make the longest palindrome, and the clever marketing of Mediterranean sea salt. Just as an example. 😛

      • Mum dissected half a chicken and explained the ribcage to me when we ate out during a family vacation. Dad talked about a science fiction movie in which the aliens’ heads exploded into green goo or discussed theology with me. And a lot of things I have forgotten to stay sane, I believe 😀

        • Are you both my secret sisters? My family still has those weird family conversations (theology, politics, history, typography, science, even when I was very little). Sometimes I think we may all be not really NT… (actually, most of us would not fit the diagnosis completely, but we would fit most categories…)

  6. It is very likely that my father especially didn’t think there was anything not normal about me because autism and autistic traits run SO strongly in his family. Compared to a lot of his relatives and cousins, I *was* normal. I had a lot of trouble with peers and teachers, but he had a lot of trouble believing it, because certainly I looked normal as far as he knew anything about kids. (I was also a first child, so my parents had no comparisons to siblings to make).

    Hysterically but also frustratingly, although HE is not autistic, I frequently have to explain to him when people are being deceptive or misleading in their speech–he *really* doesn’t get that people do this–because he grew up in a family that didn’t. Where people really only spoke to say what they meant.

    • That first child argument was one my mother made as well! Together with me being the only girl, and both my parents being the youngest siblings in their families. A lot of my behaviour was explained away by being the oldest child, and therefore different.

      Your comment about your father reminds me of Musingsofanaspie talking about her neurotypical daughter, and how the daughter copied a lot of mannerisms and ways of expressing herself simply because that’s how her mother behaved! Nature and nurture do interact in extremely interesting ways.

  7. My Mum was a nurse and my dad was a paramedic. I still don’t get it that stitches and bodily fluids (I’m keeping to the mild stuff) aren’t to be discussed near food.

    • My family similar. One of my sister’s friends had a weak stomach. She only came over for supper twice (and was unable to finish her food due to the conversation both times, and the second time, the poor girl got sick). Thereafter, my sister ate at her friend’s house when they wanted to visit with each other..

  8. My parents are both really, really weird and seem to lack more social skills than I do, and yet they’ve basically believed that I was probably autistic since I was a toddler (though I didn’t get officially diagnosed until I was in my late 20s). I suspect this is probably because I’m a different kind of weird than they are. I mean, I’m really quiet and withdrawn and they’re weird in a more in-your-face kind of way (plus I don’t even think they understand that they *are* weird). Given that the stereotype of autism is of being in one’s “own world,” I think my quietness, my withdrawal, and my disinclination to respond to people, stood out to them.

    For a long time, I had a really hard time accepting the possibility that I might autistic. This was partly because I just rationalized everything as “Well, of course I don’t know how to act in social situations! Look at my parents — how was I supposed to learn anything from them?”

    • You’ve touched on a really interesting point with regards to your parents. One of the things that makes people say to me that I can’t be autistic is because I am pretty extroverted and enjoy engaging with people. But like your parents, I do come across as weird or getting it wrong somehow. In most social interactions, I don’t pay that much attention to getting it wrong, because I’m just being uniquely me, weirdness and all. 🙂 Except when it ends up hurting people in completely unexpected and confusing ways. That does bother me a lot. But I’m not the withdrawing type.

      Your rationalisation sounds a lot like my coming to terms with the fact that I’m pretty bad at identifying my own emotions. Emotions weren’t really part of everyday conversation at home. Not that my parents were unemotional people, we just didn’t spend a lot of time hashing them out. So when therapists and the like asked me about my feelings, I usually pointed to my upbringing. It took me a long time to acknowledge that it was more than that.

  9. Even at an early age, when you realize you are ‘different’ than others, you learn to mask it. You also learn how to be ‘invisible’ so that you won’t be noticed. Because of that, people often have difficulty in think of you as having challenges, or even remembering who you are!

    We Aspies are clever, even as kids, and learn how to work the system to survive.

    • For me, it wasn’t so much masking my differences, as accepting them. It wasn’t a big deal for me. I was different, and that was it. Maybe kids who are more obviously struggling to fit in get noticed more, but I never really tried. I fitted in with my family and that was enough for me.

      Besides, having your nose in a book makes for a really good way to avoid scrutiny. 😛

      I don’t think Aspies are necessarily more clever than other people, but people on the spectrum usually do develop unique coping mechanisms. It may differ from person to person, but we all find ways to deal with a sensory and social reality that doesn’t take our neurology into account. Some just get better at coping than others.

      • Yes! Family and books, and then from that I didn’t generally put too much effort into fitting in, because I always had sisters (and cousins) and always always had books.

  10. We skipped this bit of my diagnosis because I was then in my fifties and my octogenarian parents lived too far away to attend. Also my father displays marked autistic traits and it was felt he might hijack the diagnosis and make it all about him. My mother seems to go straight into denial at any suggestion that her firstborn might’ve been anything but normal. My siblings were too young to remember my early development so we relied on my babybook, school reports, memories of life experiences and photographs (in which I’m invariably scowling or trying to escape someone’s embrace). I knew I had Asperger’s the moment my nephew was diagnosed. Suddenly everything fell into place, like why I had read the complete works of Shakespeare at the age of eleven and why I felt so at odds with the world. It was such a huge relief.

    • I think with a lot of adults, it’s accepted that parents play a smaller role in the diagnosis, because some of our parents aren’t even alive anymore. And there are other ways to examine early childhood, like the ones you mention.

      The relief on getting a diagnosis is very recognisable for me as well. It just all started to make sense when I found out I was autistic. Never quite fitting in, my obsessive hobbies, miscommunication issues, even why I find it so hard to do the dishes or to cope with itchy clothing.

  11. I wasn’t diagnosed until a few years ago, in my late 30’s… and my mother insisted I was “normal” until a few months before she died in 2006… I don’t think that many moms in this situation are unaware something is different, but rather are concerned over the judgment of others regarding their parenting. Remember, that for many of us in our 30’s or older, our mothers would have been facing the condemnation of being a ‘refrigerator mother’ if we were diagnosed with autism. Back then, there was a strong movement to view autism as poor parenting and the fault of the mother, especially… and many parents were in horror of having that judgment passed on them. I can remember sitting in meetings with teachers with conversations that, in retrospect, show that there were concerns…. my mother going on and on about how caring and emotionally in-tune I was with her, notes from teachers and diagnosticians (I was in gifted programming) noting my need for intensive support using scheduling, advance warning of changes, etc. and difficulty with social interaction especially with peers, etc. Clearly, I was showing the signs, but with my intelligence and my mother’s adamant refusal to be seen as a failure in parenting, there was no way I was going to have been labeled.

    • Yeah, my mother doesn’t like the idea of autism at all, she’s slightly less condemning of Asperger’s but not by much. The “failure in parenting” thing is definitely a factor in that, and the reason why I keep telling both my parents that – considering I didn’t have a diagnosis – they gave me the best upbringing a child on the spectrum could wish for.

      Neither of them question my diagnosis but they do question the need for “a label”, as they call it. Part of that I think is that most of my family exhibit the same traits. I don’t think they want to consider the idea that both of them are fairly BAPpy themselves, if not outright autistic.

  12. Yet again, just WOW! Thank you for posting this… much of it resonates VERY strongly for me. For my diagnosis, I didn’t have the option of having a parent with me for that part of the interview. My mom died a few years ago, and my father and I didn’t really get along at the time (late last summer). Now that I’ve been able to explain Asperger’s to him, and he has seen some of the signs in himself, we are actually on much better terms. Before my diagnosis, I just wrote down a bunch of different experiences from my childhood and school years, as best as I could remember. My document ended up being about fifteen pages, double-spaced. My therapist and I shared a great laugh about some of those experiences, as painful or confusing as they were to me at the time they happened.

    “Odd” family discussions? Constantly! Very few meals passed without a deep exploration of the chemistry behind some part of the meal, discussion and debate about the history behind one or more of the dishes, a linguistic word game or two, some complex math problems, and hypothetical analysis of some fantastical creation that my brother or I had dreamed up. I don’t think emotions were EVER discussed, because I don’t think either of my parents were good at identifying or describing their OWN emotions, and god forbid if my brother or I showed any sort of emotion, because our parents would be LOST trying to figure out what was wrong or what to do about it!

    I’m glad you have your diagnosis, and that you have such a gift for writing about your experiences!

    Thank you for sharing!

    • Fifteen pages, ha! That attention to detail shining through. 😉

      My parents are not very good at describing their own emotions either. Especially my mother tends to talk about her experiences in a very detached, analytical way, almost like she’s teaching me a lesson instead of simply wanting to talk about them. It’s all making sense now that I’m diagnosed.

  13. Hello!

    Isn’t the questionnaire Rimland’s E-2? [revised 1980]. And the E-2 is the “Checklist for Behaviour Disturbed Children”.

    Part 3 deals with “anything under the age of 10” – it is a supplementary where you fill in 1 – very true, 2 – true, 3 – not true.

    Part 2 is about patterns of language development.

    And Part 1 is demographics + biology + repetitive and restricted behaviour.

  14. Pingback: Quick update | ...autisticook

  15. Woman…you write so well, so clearly, and it is so engaging (can’t say this enough). I love your family for allowing you to grow up as you. Identity, even when it’s difficult, is so important. I was a little bit behind on reading your blog but am finally catching up.

    • I can’t get enough of your compliments either! So I’m glad you can’t get enough of saying it. 😀

      (Love reading about your adventurous life in Timor Leste, if anything you’ve really improved my scores on trivia questions like “Capitals of the World”). 😛

      • Glad to be of service! I don’t think that Timor would come up in a trivia question on its own, though – unless you go to my friends’ quiz in Lisbon, because I met them here…

  16. I didn’t really understand many things about myself until my kids were diagnosed. My psychiatrist says that I have some characteristcs even though never formally diagnosed. I think I was able to understand my children better because of my own history.

    • The genetic component does seem to be huge. Many parents end up getting diagnosed these days because they recognise so much in their children. After all, the diagnosis was never available to us as children, because you had to be pretty much non-speaking to be diagnosed with ASD before 1994. I’m not only glad your experiences give you the necessary insight to help your kids, but also that they’re giving you insight in your own characteristics. You’re not the only one!

  17. Thank you. I recently received my diagnosis but my sister is still seeking hers. I am in the UK, she is in Holland and says it’s likely to take longer for her than here in England. But your posts have given me hope for her too!

Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s