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.

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My grandma

I have wanted to write something about my grandma for quite some time now, but I have no idea where to begin.

My gran even took me to Pere Lachaise. None of the other grandchildren had insisted on that. She thought it was a bit odd but she enjoyed the visit.

My grandma died in 2009, at the age of 95. So she’s been around a long time. When I was growing up, we lived about 40 km away. In the Netherlands, that’s not very close (although not extremely far away either). I can still recall every kilometre of that car ride. When I graduated from high school and started at university, I moved closer, but of course that didn’t mean I visited more often. That’s what happens.

I loved my gran a lot, though. When I was 15, she took me to Paris, like she’d done with her other two grandchildren as well. Just the two of us, doing touristy stuff. I had a lot of fun. I also got into a lot of arguments with her. I think that was the first time I realised that my gran and I were very much alike. Infuriatingly alike.

A couple of days back, there was a special guest post on Musingsofanaspie.com written by her daughter. The way she described her mother reminded me how parents nowadays are able to have much more open and affectionate relationships with their children than back in the 40s and 50s. Because my grandmother was never able to have that kind of relationship with her children – my father and my uncle.

Gran was born in 1913, just before the start of World War I. Her father was a dairy farmer in a small village (half the people still living there are my relatives in some way). She told me that when she was around 9 or 10, her father left the local church and decided to raise his children in the anthroposophical way, after the tenets of Rudolf Steiner. I do know that my gran wasn’t at all religious, which seems to fit that story.

oma-pothoedWhen she was older she was allowed to go to secondary school and get a diploma, which was not unheard of but certainly not common for a farmer’s daughter in those days. It enabled her to work at the fairly big flooring manufacturer just outside the village (and yeah, I’m pretty proud to say that that same local factory is now a global enterprise). I’m not entirely sure what she did there, she said she did lab work and after an accident with hydrochloric acid the director allowed her to work in his office as an assistant while she recuperated. She sounded very proud of having worked for this man.

The reason why I sound a bit careful when describing my gran’s stories is because sometimes she felt the need to appear of a higher social standing. For example, she always said her dad was a “gentleman farmer” or “landed” when I know he was nothing of the sort. My parents have discovered some things through genealogical research that don’t quite match up with her stories either. Since I’m not entirely sure which ones are fake and which ones aren’t, I’m simply going to describe things the way she told them to me. I do think most of them are true. She was a marvellous story teller though.

That’s my gran all caught up in a story she’s telling on my 4th birthday. The girl in this video isn’t me, by the way.

opa-oma-louwAnyway, when my grandparents met and got married in 1934, they started their own business. My grandad was a carpenter and upholsterer. It was hard at first, because of the depression, but business increased gradually and they were able to buy a big house with a store underneath after a few years. That’s where my dad was born just after World War II. Because someone had to manage the store while my grandad was out doing assignments, my gran became a businesswoman. She did the books and finances as well. My grandad was doing client acquisition and making social calls and being an all around nice guy with a gift for interior decoration. The business pretty much shifted from upholstery to interior design. They started becoming a household name in the upper classes of the area. I think that’s where my gran’s ideas of having to maintain a certain class came from – after all, you can’t have an ordinary farmer’s daughter advising you on which candlesticks to buy.

From the way my father tells it, the store was everything to her. After the store was handed over to the next generation, she took pride in her cooking and her garden and her quilts. She wasn’t very involved in the lives of her two children and didn’t show them much affection. When she did show interest in someone else, it was always with clients or acquaintances. With her children, she kept her distance. But then again, my grandad was fairly authoritarian and not very touchy feely either, which wasn’t considered abnormal in those days.

After she died, I was expecting to hear people describe my gran as “egocentric” or “tough”. However, hearing her described as “unemotional” and “loveless” on top of that shocked me to the core. My mother, her daughter-in-law, said my gran was incapable of showing love to those closest to her. But what about me then? Well, I was far younger than her first two grandchildren, so more distance meant more love. Apparently. I don’t want to discount the experiences of my mother and father in relating to her, but it’s just so different from how I saw her.

oma

My weird grandma. Opinionated, infuriating, stubborn gran. Emancipated, rigid, fairness-in-everything gran. My grandma who actually respected me for standing up to her. Gran who grilled every man I dated to make sure they were good dating material and wouldn’t let me squander my talent on housework and childbearing. My grandma who spent hours on the phone talking about her life and her interests and hardly ever stopping to ask how things were with me. Gran who yelled at me for not being able to boil an egg and loved explaining to me how to make meatballs after I begged her to show me (she complimented me afterwards by saying mine “were nearly as good as hers”). My gran who had the craziest sense of humour and who loved staying up until 4am with her weird opinionated infuriating granddaughter to drink lots of alcohol and talk about Life, the Universe, and Everything.

On my 7th birthday. She’s pointing and laughing because we’d built a huge heap of fallen leaves in the front garden and were diving into it. The little girl is me.

I still miss her.

I’ve been told I’m probably the only one.

Cognitive love

My baby nephew is celebrating his 1st birthday tomorrow. He’s my youngest brother’s first child and so very adorable. But my brother and his wife are both adorable too so I guess it’s a genetic thing. 😉

Anyway. Because I’ve been so fixated on the birthday party being tomorrow (notes in my Google Calendar and everything), I completely forgot that his actual birthday is today. Until my sister-in-law posted a picture on Facebook showing my nephew with a party hat.

Oops. My mind immediately went into social panic mode. Keep in mind that this is my brother, who knows better than anyone how awkward I can be and who loves me regardless. He’s the only person in the family who isn’t socially awkward in one way or another (my father’s pretty good with people as well, but he admits it’s still not entirely effortless and he doesn’t really start enjoying it until after one or two drinks). None of us are diagnosed but my youngest brother is very obviously the only neurotypical person.

I had no idea what was expected of me.

I’m going to the birthday party tomorrow. My brother knows this because he invited me. So should I congratulate them tomorrow? When I’m supposed to be there? Or is the posting of this picture some kind of clue that they’d like to be congratulated today as well? Will they be upset if I wait until tomorrow? Or will they say I’m silly for calling to congratulate them when I’m already coming by tomorrow anyway?

OK. Hold on. Take a deep breath. YOUR BROTHER LOVES YOU. Nothing you can do will make him think you’re any more of a fruitcake than you already are.

And so I arrived at the easiest solution. I called my brother and asked him if he wanted to be congratulated. He laughed and said yes. And also that he liked me calling to ask. And that he was looking forward to seeing me tomorrow.

I love my family. Even if I have to reason it out sometimes.

Tripping down memory lane

Age 10. The high point of my “I only want to wear blue dresses” phase. I really hated that video camera flash light, which is why I’m keeping my head down. My youngest brother is not allowed to touch the puzzle pieces (normal sibling behaviour) because I’ve already sorted them according to category (not so normal).

I must have been about 8 or 9 here. Still sucking on my fingers and playing with my hair. Not interacting with the other kids at all.

My 7th birthday. My grandmother is explaining something about my birthday hat, I’m obviously concentrating on what she’s saying but I don’t look at her or smile until she’s done talking. My grandmother might have been on the spectrum too.

Age 5 or so. Flapping my knees. Also forgetting to put on facial expressions unless prompted, and then they’re slightly overexaggerated. 😉

Age 6. Toewalking. Toerunning. Overall fairly uncoordinated motor skills.

I’m not posting the one of me and my younger brother spinning in circles in the back garden because we weren’t wearing much, lol. I don’t think I come across as autistic in these videos all that much, just slightly “off” maybe. But not to the level where I’m stimming in every single video, for instance. And I’m obviously interacting with my family. So I’m not entirely sure what to make of this.

Edited to add:
In fact when first watching all the material, I saw myself behaving like a typical child. The videos start in 1980 when I was 4 and my younger brother had just been born. As the years progressed, my behaviour kept on feeling normal, and that feeling got confirmed when I saw my younger brother behave the same way at the same age.

And then I saw my youngest brother appear on screen, born in 1982. The contrast is absolutely frightening. He is constantly looking at people and smiling and pointing and touching and interacting with them on every possible level. He doesn’t fidget, even as a baby and a toddler. He looks bewildered sometimes but mostly in response to something I or my younger brother do.

As if even at that age, he already understood the rules of social conduct better than we did, and saw neither me or my younger brother following those rules. It’s now nearly 30 years later and he still looks bewildered by our conduct sometimes. 😉