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.

I’m me

Just a quickie.

I had my second diagnostic test today.

The therapist said she saw no need for the third appointment because those tests wouldn’t add any useful additional information. She said she only ordered those tests in case things weren’t all that clear cut.

And that I had obvious impairments.

I’ll get the official diagnosis on October 14th.

I have trouble coming to terms with the fact that I can stop fighting now. I no longer have a goal. I don’t know how to go on from here.

I’ve reached my goal. I’m autistic.

im-me

Lists are an autistic thing, but they’re not an impairment

So, after the success of my huge list of things that I think make me autistic, I figured I’d give it another go. My childhood interview was pretty much a fail (more about that later), so I knew I needed some way to show the diagnostic therapist the impact that the autistic stuff has on my life. Which goes against every instinct I have. Because I hide my vulnerabilities and I concentrate on my strengths. Which is a healthy thing to do. Except when a diagnosis is completely dependent on having a significant impairment. “Needing some acknowledgment and validation” is not a diagnostic criterion yet, unfortunately.

Writing this list took me countless drafts, different set-ups (Word or Excel document? Order by categories or severity?), innumerable tears, and 11 days. It was a really hard thing to do. But it was necessary. I also toyed with the idea of making it funnier by listing examples, but then decided against that because I need this to be as bleak and depressing as possible. I might have to cheer myself up with writing a list of things I’m awesome at. Anyway, without further ado, the list of things I suck at!

FINANCES

I have no overview of my bank account balance.
I don’t pay bills regularly.
I have no idea which bills have been paid and which haven’t.
I have difficulty prioritising payments.
I have no idea of the amount needed to cover my monthly expenses.
I have difficulty assigning budgets.
I sometimes buy things I can’t afford.
I’m unable to save up money for big expenses.
I forget to open letters and bills.
I have problems organising important documents.
I forget to do important things like apply for unemployment.
I forget to return important forms.
I have difficulty replying to important emails.
I have difficulty writing job application letters.
I get upset about making phone calls to companies and organisations.

PERSONAL CARE

I don’t take regular showers.
I don’t brush my teeth regularly.
I have difficulty remembering to put on deodorant.
I wear the same underwear for several days in a row.
I sometimes forget to shave my armpits even when I’m wearing something sleeveless.
I bite my nails and nail beds, sometimes until they bleed.
I pull out my hair.
I pick my nose even in public.
I sometimes forget to go to the toilet and end up wetting myself.
I forget to eat breakfast.
I usually have no energy to make dinner.
I postpone making appointments for the dentist, the doctor, and the hairdresser.

HOUSEHOLD

I don’t do my dishes regularly.
I don’t clean my kitchen work area regularly.
I don’t vacuum and clean my floors regularly.
I don’t clean my toilet and bathroom regularly.
I don’t do laundry regularly.
I don’t maintain my garden.
I don’t tidy up after myself.
I leave my dirty clothes in a pile on the floor.
I forget to throw food out when it’s gone bad.
I often use knives and plates from the day before.
I forget to bring empty bottles to the recycling bin.
I don’t change my sheets regularly.
I sometimes forget to take out the garbage.
I have problems keeping my clothes and shoes organised.
I forget to water my plants.
I don’t clean the cat’s litter box daily.
I have problems throwing away things I have no use for.

WORK

I’m often late.
I call in sick too often.
I don’t know how to pick my battles or agree on small things even when privately disagreeing.
I don’t know how to voice my opinion in an empathetic, non-confrontational way.
I get very upset when my own priority list gets changed by my manager.
I have difficulty handling criticism that I think is unfounded.
I don’t know how to handle tasks I have no knowledge of.
I have difficulty asking for help.
I try to postpone phone calls to customers as long as possible.
I have difficulty answering emails when I don’t have a real answer yet.
I always follow unimportant rules (like no private internet use at work, or wash up your own coffee cups).
I get upset when other people don’t follow those rules.
I get confused when there are implicit rules that nobody says out loud.
I have problems with lying to customers to protect the company’s interests.
I have difficulty handling unscheduled meetings.
I get upset when people are talking close by or when the radio is on while I’m trying to work.
I get upset when a ceiling light malfunctions.
I don’t like company outings that involve more than just having a couple of drinks.
I have difficulty joining coworkers for lunch unless explicitly invited.

FAMILY AND RELATIONSHIPS

I forget to congratulate people on their birthday.
I forget to plan a visit or send a card when someone has just had a baby.
I don’t often take initiative to meet up with family or friends.
I don’t call family or friends to ask how they are.
I forget to give small compliments.
I need to be explicitly told that information is private and not meant to be told to others.
I have difficulty not focusing on solutions when someone tells me about their problems.
I have problems in the early stages of a relationship because I get obsessed with the person.
I don’t know how to keep a conversation going when I’m not interested in the subject.
I rehearse conversations in advance.
I get upset when someone is late.
I don’t know how to talk to others about my own emotions.
I feel more connected to my cat and my books than to most people.
I often have trouble thinking about what someone else likes to do, unless they tell me.
I don’t know how to introduce myself to strangers.
I often say inappropriate things.
I often take things too seriously.
I have problems not interrupting people when I think of something interesting to say.
I get very upset when I think people are not listening to me.
I am too trusting of strangers.

FEELINGS

I have problems coping with changes in plans.
I always order the same things in fast food places.
I have irrational food dislikes that I disguise as allergies.
I get upset when I’m in a crowd.
I get very upset from loud or ongoing noise.
I get upset in brightly lit environments.
I don’t like having the TV on.
I have problems personalising my environment (like hanging up pictures).
I have problems disconnecting from dreams on waking up.
I have problems watching thriller or horror movies and knowing it’s not real.
I don’t get anything done when I’m sick or in pain.
I get angry when being complimented on something that I think is undeserved.
I get stuck on things needing to be perfect.
I hide in my bedroom for weeks when I feel unable to cope with things.
I hate myself when looking at this list.
I want to be perfect.
I don’t want to be normal.

Quick update

I haven’t posted in a while. The reason for this is that I’m stuck on two things, both related to the second phase of my diagnostic testing.

Last week I had my first interview, together with my mother, about my behaviour in childhood. I am still processing what happened during that interview, and I haven’t gotten to the point yet where I can write about it.

Update! I’ve finished my post on the childhood behaviour part of my diagnosis, in case you’re interested.

My second interview is next week, and I’m working like crazy on getting some sort of grip on my thoughts so I’ll be able to present a coherent picture of how autism is affecting me at the present moment.

It’s hard work, but I think I’m sort of coping. Well, apart from pretty much not having left my bedroom for the past two weeks. Which is OK. I’m not going to push myself out of my comfort zone, there are more important things to focus on right now.

Hopefully I’ll be able to write about everything at length soon! In the meantime, here is a link to an animated kitty who purrs if you rub her belly.

flash-kitty-screenshot

http://s3.amazonaws.com/wbx-files/maukie.swf

Crying

There was this moment when I had job coaching. I started job coaching because I’d gotten fired a few months previously, from a job I loved. And it wasn’t the first time I’d lost my job. And I figured maybe I could use some help figuring out why it always went wrong.

My job coach asked me to describe my wishes and goals. And somewhere along the line, I can’t remember how, I mentioned that all I really wanted was for my employer to accept me the way I am.

And I felt tears starting in my eyes.

The horrible thing was, my job coach noticed too. And she asked the dreaded question, “How does that make you feel?”

Please. Don’t ask that question. Don’t remark on the fact that you see the tears in my eyes.
I cannot cry. I MUST NOT CRY.

Not where you can see me.

I don’t know why I feel such a near-instinctive aversion to letting others see my vulnerability. It’s not reasoned out. As soon as I start feeling a “bad” emotion, my reaction is to STOP. HIDE. I feel bad about crying in private too, bad to the point where I will slap myself to stop crying. But when someone else is there it feels far, far worse.

I can vividly remember the times I sobbed like a child in a public place in the last 20 years. At the funeral of the mother of a friend of mine, when I thought of how the rest of the family would miss her (I didn’t know the woman at all). When I was managing a store all by myself and I had my first angry customer (I was 17). When a boyfriend broke up with me completely unexpectedly. All through the second half of the film “Once Were Warriors” (seriously unstoppable sobbing). When the manager in one of my jobs told me she didn’t want me to come back to work the next day, even though the company had offered me a permanent contract and we were in the middle of negotiations. When I was told in my last job, the job that I loved, that my putting in overtime to get the job done wasn’t appreciated. When I admitted that I wasn’t able to keep track of my finances and that I’d probably get evicted from my house very soon because of all the letters that were lying unopened on my bed. I mean the kind of sobbing that makes you gasp for breath. Buckets of tears. Uncontrollable.

And every time I felt so angry and embarrassed and awful that someone would see me like this.

It’s probably normal. Nobody likes crying.

But I never got that sense of “release” that other people kept mentioning. That I could “let it all out”. Crying just made me feel worse. Even when I cried in private. I just felt tired afterwards. But not relieved. It was all still there. Crying didn’t solve a thing.

And yet.

In the past few months, while I’m working on getting diagnosed, I’ve cried. I’ve cried so many times. Reading other people’s experiences. Their feelings. Their hopes. Their fears. I cried and cried and cried every time I recognised something. Something that touched on that idea of being accepted the way I am. So much crying. It’s always in private, but it’s a lot of crying.

I’m crying as I write this.

And weirdly enough, it doesn’t feel all that angry and embarrassed and awful. I haven’t slapped myself to make it stop. It’s not my idea of fun, but still. It feels a bit like at least it’s OK to cry. It’s a sad cry but also a happy cry. A forgiving and compassionate cry.

I cannot believe how much I’ve been crying.

And it feels like it’s going to be OK.

Further testing

Well. At least I am a little bit autistic enough.

With regards to the intake interview you have had with my colleague on August 13th, we would like to conduct an Autism Spectrum Disorder test with you. Our office manager will call you to set up several appointments, at least one of which will be with one of your parents (to get a heteroanamnesis on your past), and one to get an anamnesis on your current situation (for this appointment we will also invite someone close to you, this has to be someone who knows you well).

So all that effort was just to see whether I even deserve to be tested? Dear lord.

And the interview with someone close to me will be interesting. I’m single. I have a few close friends but I can’t really say if any of them know me well, because I tend to downplay or hide my weaknesses. Do my friends think I’m autistic enough? I could ask my ex, he definitely agrees on me being weird. 😛

But am I supposed to be present at both those interviews? The wording seems to say (“also”) that I’m only to be there for the second test, but not the one with my mother or father. So why one and not the other? CONFUSING.

Smile

I was thinking about how nervous I was about the diagnostic process and her reading my letter. Trying to keep my breathing even. Looking at a painting on the wall. Trying not to fidget too much.

“Do you realise you’re smiling right now?” said the therapist as she looked up from my letter.

I looked at her, feeling confused. “What do you mean?”

She clarified, “Here in your letter it says you often smile at inappropriate moments. So I was wondering if that was what is happening now. You’re smiling. Are you aware of that?”
smile-right2
I started grinning and said I had no idea I was smiling. And then got completely confused about what I am saying because yes I know I am grinning now. But not smiling a minute ago, I didn’t know that. Was I really smiling?

She said she could see that the grinning was a nervous reaction. Those things are obvious to people who can read faces, I guess? And she said she understood what I was trying to say. So I could stop worrying about my words and what my face was doing without me having any control over it. When I had permission to stop doing words I could start feeling. I felt… at a loss for words. That’s how they call it when you can’t grasp a concept, when it doesn’t fit reality. When things simply don’t make sense. I don’t know how to describe my feeling.

I was smiling.

I didn’t know.