On Monday 13th march 2017, I finally had the assessment I had been waiting for since last August: my ADOS assessment to test for autism! This was such a big thing for me, and I know I would have been really excited about it if I wasn’t so depressed.
Because I’m still pleased it finally happened, and in case anyone wants to know what it’s like to have one of these assessments, I have decided to write about the different activities I had to do. Some of them were very bizarre, but it was very interesting at the same time.
After we arrived and had a quick chat with the two psychologists, they asked my mum and dad to leave the room. I had to go and sit at the desk, and the first psychologist did the tests with me whilst the second sat in the corner and took notes.
This is what we did:
She got me to do a weird puzzle made of several blue and pink pieces of foam. They were all the same shape, and she told me to make the same shape as the one on a piece of laminated paper. She only gave me half of them, so I had to ask for the rest of them. I’m quite good at puzzles, so I found it easy. She them asked me to look at the completed puzzle and asked me what I thought it looked like. This was where I struggled, because I had no idea what the hell it looked like, other than a group of foam blocks. She kept prompting me, but I had no idea. When she eventually said it looked a bit like a bat, I couldn’t see it, so I just nodded.
The next bit was the weirdest thing I have ever done in my life. She got out a picture book called Tuesday, which had no words, and asked me to describe what was happening as I read it. It was bizarre; from what I could gather, the story was about frogs coming out at night on a Tuesday and flying around on lily pads, going into houses and generally doing very un-frog-like stuff. I was very confused, so my descriptions were very bland. For example, on a page where several dozen frogs were flying through the night sky, I said, “And now there are lots of frogs… and they’re sort of hovering… in midair… on lily pads.” So I wasn’t exactly descriptive. She kept pointing out the expressions on the frogs’ faces and asking me what they were feeling, as I hadn’t thought to mention this without her prompts. In case you’re interested, once the sun rose, the frogs went back to their pond, leaving the humans puzzled as to why there were lily pads everywhere. And on the next Tuesday, there were a load of pigs flying. This led her to ask me if I know what that figure of speech means. I actually know what ‘when pigs fly’ means, so I gave her the following explanation: “People say ‘when pigs fly’ when discussing a situation that is extremely unlikely to happen, as pigs flying is impossible, so they are basically saying that it is never going to happen.” She also asked me if I knew what ‘raining cats and dogs’ means, but I had no idea.
I then got shown a cartoon picture of people at a holiday resort with a beach and a hotel and that sort of thing. She got me to describe what is going on, and my descriptions were suitably bland (“There are people on a beach, doing things like swimming and water skiing… and there are some people playing tennis…” etc), as I didn’t know what to say. She then asked me if I liked to go to that sort of place on holiday. I said no, because I’m not interested in visiting a beach, because places like that are too busy. She then asked me where we go on holiday, so I told her about the place in Staffordshire my family visited every year for eight years, and mentioned that I enjoyed going to Alton Towers. She said she hates thrill rides because she is really scared of heights. I now realise that this was an attempt to get me to sympathise with her, but at the time I was confused, so I just nodded awkwardly.
She then asked me to imagine that she was an alien, and I had been picked to teach her about things humans do. She asked me to explain how to brush your teeth by miming. She showed me where the imaginary sink and stuff was on the desk, and asked me to demonstrate brushing my teeth. I was really confused and embarrassed, and sat there for ages just staring at the desk, not knowing what to do. She eventually prompted me by ‘handing’ me the ‘toothbrush’ and asking me what to do with it. So I just said, “You run it under the tap and put toothpaste on it and then rub it against your gums,” and made a quick mime of brushing my teeth.
We then had a quick break while she took some notes. She gave me some things to fiddle with: a notepad and felt tip pens, a mini pin ball machine and a pin art toy. I picked the pin ball machine. I also needed help to open my bottle of lemonade, as my hands were sweaty and I couldn’t break the seal. I think my choice of toy might have been significant (as I picked one which was very easy to stim with, and is also very repetitive), but I’m not sure.
One the break was over, she got out a bag of miscellaneous things and told me a strange short story using five of them. She then told me to pick out five and make up my own story. I couldn’t do this at all; I didn’t even know which ones to pick, let alone what to do with them. I just sat there and mumbled that I didn’t know what to do, so she took them away.
The final thing she did was ask me about myself. She asked me what I enjoy doing (watching TV and writing stories; she seemed to find this interesting), if I can understand what emotions I am feeling and how they make me feel (I don’t know how to tell my thoughts apart, but I can recognise the physical responses my emotions cause and tell them apart that way), if I have a boyfriend or a girlfriend (no) and what I want to do in the future (I want to be an author, I don’t want to get married and I don’t know if I will be able to live independently). She asked me what I wish my life will be like when I am 27, so in ten years time; I said I would hope to have written a lot of short stories and maybe have one a writing competition or two, and that my CFS would be a lot better. She commented that they were very realistic goals.
And then the assessment was over. I had to go out into the waiting room and sit with my parents while they went over their notes. About 20 minutes later, they called us back in. They explained that my scores on the ADOS indicate that I am indeed autistic, which made me smile, because I finally knew that I was right. They also mentioned the way the ADOS is scored, and the two thresholds, one being for an Autism Spectrum Disorder, and the higher threshold being for autism. I am still not sure of the difference, but they said it has to do with how ‘obvious’ your autistic traits are. For reference, they said I scored in the upper threshold.
So there we have it. Finally, after nearly four years of battling with the NHS, I can finally say that I am Actually Autistic!