Tag Archives: diagnosis

Observations

I’ve been reading and re-reading the report from my assessment. It’s strangely exciting to know that a near-stranger took the time to write a nine-page report all about me! It’s also really interesting to see the way a professional describes me in terms of autism. I think the most interesting thing to me was the way she described my social communication. I was under the impression than I did a pretty decent job of passing for NT most of the time, but it seems I was wrong!

I was particularly surprised that she included “makes eye contact much less than might usually be expected”. I knew that my eye contact was a bit questionable, especially with new people. But I thought that I made about as much eye contact as most people, just that I found it a bit more uncomfortable and effortful. During the assessment I was very conscious of eye contact, and kept getting distracted wondering if I was making too much or too little, near the beginning. As the assessment went on I think I just gave up on trying and ended up making very little.

I also found it interesting that she described “limited non-verbal communication (facial expression, gesture)” and “little variation in tone or pitch when talking”. Again, I thought I probably passed as fairly NT, but I guess not! In the assessment I had my hands on my lap under the table, because I was nervous and trying not to pick my fingers (I do it less when I can’t see my hands), so I think I think that probably contributed to the lack of gesture.

I was less surprised by the ones about social interaction:

rarely or never asks conversation partner about their thoughts/feelings/experiences”
I guess this was about the bit where she mentioned quilting and I completely ignored it!

although happy to engage in a conversation, social overtures were restricted predominantly to personal demands or related to interests/topics”
My first thought when reading this was “what else are you supposed to have conversation about?” – which I think means that it’s definitely accurate!

At the end of the report, she gave a list of lots of resources to look into. She recommended a few ASD social groups – which is exciting but also very scary!

There is a lot to think about now, but it’s pretty much all good things. So although it’s quite overwhelming, it’s a good kind of overwhelming. That’s a pretty novel experience.

 

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Answers

It’s been a long two years since I began to realise there really might be one thing to explain it all.

It’s been a long year since the most intense period of anxiety and burnout of my life.

It’s been a long five months since I first took the leap and asked for a formal assessment.

It’s been a long few weeks since I poured out my evidence and counterevidence to a stranger, and went home to realise just how much evidence I provided.

And now I finally know for sure.

…fulfils the diagnostic criteria for an Autism Spectrum Disorder.

It’s really true. It’s really me. All of my fears and suspicions and theories were correct. All this time I doubted myself, or thought I would have been diagnosed younger, or that I didn’t have enough problems to fit, or that surely someone would have noticed.

But I was right. I have my answers at last.

Formal assessment

Well, my assessment was yesterday. I still have to wait a couple of weeks for the results appointment. But at the end of the session, the assessor person told me she thought I’d very likely get a diagnosis.

Since the assessment I’ve been doing lots of research about the diagnostic tool that was used, the ADOS (Autism Diagnostic Observation Schedule). It’s been very interesting to find out what the ‘expected’ responses were and how I compared.

Note: If you are expecting a formal assessment soon that might use the ADOS, I would recommend you don’t read the rest of this post. The assessment will be more accurate if you don’t know much about what to expect.

There were several activities involving objects and tasks. I assumed that they were the end in themselves, but of course it turns out they were just opportunities for the assessor to look for certain social behaviours. How very autistic of me to be so focused on the task at hand that I forget what the actual purpose was!

The first task was a simple puzzle. There was a laminated sheet with the outline of the completed shape, and then a set of foam pieces which were all the same shape, to be fitted together. When the assessor gave it to me, she gave me only a few of the pieces and said “Let me know if you need any more bits and bobs”. I thought it was weird that she didn’t just give me all of them straight away, but I didn’t even consider the fact that it might have been deliberate (my mum pointed it out afterwards!).

The task was actually supposed to see how I asked for the extra pieces. I was quite focused on the aim, so I don’t fully remember how I asked. I’m pretty sure I didn’t make eye contact, I think I just said something short like “Can I have some more pieces?” I remember that when I asked for more, she didn’t give me all of them – so I had to ask a second time to get the last ones. At that point, she said something like “It might need all of the pieces”, and I think I just said “Yeah” because – it obviously needs all the pieces!

Another task was to tell the assessor how to brush her teeth, imagining that she had “forgotten how to do everything”. When I looked this up, apparently the instructions are to “show and tell” – and the task is supposed to test how well you use gesture in combination with words. I can’t remember whether the assessor actually used that phrase, but if she did I must have ignored it. I told her using almost exclusively words. The only gestures I used were when I moved my hands in order to remind myself which parts I was talking about – and to check which hand was left and right so that I said the correct one.

Then I had to make up a story using some objects. The assessor got out a box full of things, and then chose five and told her own story with them. Then she told me to choose five of my own and tell a story. I chose a Rubik’s cube, a small red wooden cube, a black feather, a block of white foam, and a purple spiky ball. I had trouble thinking of any ideas for the story. The first thing I said was “This is a baby cube and this is the parent cube” to describe the Rubik’s cube and the red block. It seemed logical because they were the same shape but different sizes.

Then I said “They’re playing catch with the ball” and showed the purple ball moving between them. Then I couldn’t think of what to do next but eventually I said “this is a baby block as well, but it’s older” about the foam block – because it was a sort of in-between size (but not actually a cube). Finally I added the feather and said “This is like a bat, and the baby uses it to hit the ball”. Then I said that was the end. It wasn’t much of a story. When I looked it up, I found that it was testing your ability to assign personalities to objects (which I guess I… sort of did?), and your ability to make a story with a beginning, middle, and end (which I… definitely did not).

The next task was to tell the story from a picture book with no words. The assessor told the first few pages, then gave it to me to carry on. I noticed that she seemed to talk more about intentions and emotions, “The frogs want to go that way,” “The frogs are having fun”. When I carried on, I just described what was happening in each individual picture, “They’re going over some houses,” “They hit a washing line,”. (Yes, the story was about flying frogs). I didn’t really make any connections between the pictures or create an overall story from it.

The last activity was to describe a picture. I was given a laminated sheet that had a photograph of a piece of embroidered fabric showing a scene. I described what I could see in the scene – “There are lots of people around a table and it has food on it.” Then I tried guessing what the scene might be “It looks like it could be a party. Maybe a birthday because there’s a cake, although there aren’t any candles on it.” The assessor asked me where I thought the picture was set, and I said I couldn’t tell because all the people looked different. Then she said something like “It looks like it’s made of fabric. I’ve always wanted to get into quilting like that”.

I thought that was a kind of weird thing to say – why would she start talking about herself in the middle of an assessment about me? So I just ignored it and kept looking at the picture to try and think of more description to add. When I looked up the ADOS, I found that the assessor talking about herself was supposed to be a ‘cue’ to get me to chat. Apparently I was expected to ask her more about it or say something in response.

The rest of the assessment was mostly an interview, with questions about things like emotions and relationships. She asked what things made me happy/sad/angry, which I found really hard to answer. I said I thought being happy was something that seemed to happen more randomly, rather than as a result of specific events. And she asked me to describe how certain emotions felt, which I also found really difficult.

We also talked a lot about childhood, things like difficult making friends and having restricted interests. My mum said that there have been times where I get obsessed with something and don’t want to talk about anything else – she listed lots of examples, past and present. I found that interesting, because I thought that I was pretty good at ‘hiding’ my obsessions. I mostly just want to think about them alone anyway, so I thought I didn’t usually get into talking about them that much – but apparently I do!

It was a very interesting experience, and it wasn’t as stressful as I thought it might be. At the end, the assessor told me she has to get all the information together and consult with a colleague before she can agree on a diagnosis. I gave her a printed list of traits which I had annotated, and she said that would be very helpful. Now I just have to wait until the 11th for the results appointment.

I want a diagnosis.

(This was originally written on 9th September 2012)

I want a diagnosis.

I want to be able to remember events from my childhood and think “I know why I reacted that way. I know why those things happened.”

I want to be able to tell other people a handful of words and them be able to know – or find out – what problems I have, what I need, what I can’t cope with, and what they could do to help me.

I want to be able to tell myself that I’m unique, that I’m special, that I’m different.

I want to be able to find people just like me by typing the same handful of words into Google.

I want to be the only person like me, everywhere I go.

I want people to notice I’m different.

I want people to say “I never would have guessed” and later think “it makes perfect sense”.

I want a diagnosis of something rare and misunderstood. Something with stereotypes which are wrong. Something that will make people fear or respect or avoid me.

I want a diagnosis. I’m just not sure what diagnosis it is that I want.

In the end I tell myself that I’m making it all up. There’s nothing special or different enough about me to warrant diagnosing with anything.

But it’s only now that I am really realising how much trouble I had when I was younger. Maybe I just assumed that everyone feels like the outcast when they’re a kid. That everyone feels like they don’t have any friends, that everyone hates them, that they’re the butt of the joke every time. That they feel like they have nothing in common with their peers. That they can’t cope with living the life of the person they’re supposed to be.

Because I don’t think those things are normal. Not to the extent that I experienced them. But if they aren’t normal, then what? What does it mean? It would be so easy if everything I experienced could be pointed to one disorder, one cause, that would sum up my whole life. It doesn’t seem to be that easy. And I have no idea where I’m meant to go from here. Do I just give up? Assume I’m normal until proven otherwise? Maybe that’s the best way. But I’m not sure if I’ll ever actually be able to believe it. I’ll just be left, confused and unresolved about what might or might not be wrong with me. Maybe everyone exists in that state constantly.