Assessment next week

I'm worried my report won't include all my needs because I think I did a poor job of communicating them. E.g. she said "you've written on the form that you once had a meltdown after going away with your partner for the weekend, can you describe that to me?" I looked blank, she said "oh don't worry" and moved on, and it was only after the assessment that I realised what she was talking about - I used to have a meltdown EVERY time we spent the entire weekend together even just hanging out at home due to the social demands of not having solitude for that long. I couldn't even consider going away for a weekend - that's so far beyond my capabilities that I just froze when she brought it up as I knew I wouldn't have written anything like that. I'm worried that even after me talking for 4 hours there's this huge gap between how severely my autism affects me and the impression I managed to communicate.

No I was diagnosed as having ASD, it just took much longer than the assessment was supposed to take as so much time was spent on the first section where I was apparently sounding like I didn't have it based on my question responses. I was told it would be 2-3 hours and it was about 4. We didn't do any ADOS tests, only had one 5 minutes bathroom break, and I left within 5 minutes of getting the diagnosis. The assessor said it had taken a long time because I'd clearly put strategies in place to manage my life. Instead of answering questions literally, based on how things are now (basically fine), I think I should have explained from the start how bad things were before I realised I had ASD and was trying to live a "normal" lifestyle.

As for what happens now, I've been told to expect my report in about 3 months time and that I'll be offered a follow up appointment then.

This just goes to show how different the assessment process can be depending on who’s doing it.

i had an initial two hour interview then an IQ test which took getting on for two hours followed by the ADOS test which was around an hour. There were also two separate interviews with people who know me (I wasn’t present). Finally i got around an hour of feedback two weeks later.

It’s a shame there isn’t more consistency among assessors. I might not have “passed” the processes you both went through.

Sorry to hear that you had a bad experience. I'm assuming by the nature of your comment that you were not diagnosed as having ASD.

Its difficult to provide an objective response to you, but from my own experience this week I would say that the lack of notice wouldn't or shouldn't have affected the outcome. I was also give short notice - under a week and for me that worked well. Had it been weeks / months notice I think that I would have been more anxious for a longer period of time.

What I did find helpful was the months of research that I couldn't help but do - just to get an idea of what to expect. I didn't create a script or plan in my head beforehand, I promised to myself that I would simply be myself on the day and not try to0 second guess what questions I would be asked by the assessor.
Yes, I had an awareness of the various ADOS exercises to expect, but did not think about how I would approach them on the day. I knew that there was pretty good chance several of the following would come up...

• Shapes - I didn't know what the shapes would be nor did I plan what I would do with them
• The Map - Yes I knew what the map was, but didn't think about what I would say about it
• THAT BOOK - Now this one did worry me, but I just acted like my usual analytical self
• Describe an activity - I was expecting (hoping) that it would be how to make a cup of tea (I'd certainly "go to town" on that one! However, I got teeth brushing which threw me a little

You said tat your assessment went well over the predicted time, but didn't mention how long it was expected to take. Was that your expectation or did the assessor tell you how long the expected it to take? My assessment was 2 1/2 hours from start to finish which included a 10 minute break between the first part and the ADOS, and then 30 minutes after the diagnosis for Q&A and the like.

There is no need to feel bad about wasting time. It was clearly identified that an assessment was needed (we all know that it can be difficult getting past the initial acceptance for an assessment referral). Not every person assessed is going to be diagnosed as having ASD.

What are your plans now? Has anyone given you any indication of what happens next?

Gary

So in hindsight it would definitely have been a good idea to prepare. The assessor spent the first hour asking me about routines and flexibility and kept saying "it doesn't seem like this is a big deal for you" because in answering her questions I said I don't always wake up or have breakfast at exactly the same time. Later in the assessment, after she'd basically given up on that section, she mentioned things like eating out (which I would never consider doing because I like to eat exactly the same foods every day) and holidays (I don't go on holidays because I don't like being out of my regular routine or environment). If I'd prepared a list in advance of how the need for sameness affects my life I could have made sure I told her those things early on rather than her getting the impression I was basically a normal person and then having to correct it later. The assessment went well over the predicted time due to this misunderstanding.

I feel bad for wasting so much of her time but they did only give me four days notice of the assessment.

Hi MrSolo

I have just posted my experience "Assessed and diagnosed today" - you may want to give it a read.

Hopefully it will put your mind at rest about your assessment this week.

Good luck!

Hand gel if you have a thing about touching things. I also had my headphones for before and after and knitting to occupy my hands. 

Is there anything I should bring with me? I guess food and water in case it goes on longer than expected, and plenty of layers as public buildings are usually cold. Anything I haven't thought of?

The part with the picture book and the objects on the table is called the ADOS test, you can google it.

I found it quite strange (but not unpleasant). In retrospect my performance in this part of the assessment probably left them in no doubt I am autistic.

My NHS assessment last year took a whole day with breaks.  Most of it consisted of the guy working through a thick 'workbook' of questions.  By the end of the day I'd also done some more practical tests.  I can remember being asked to narrate my own story as I worked through a picture book with no words, to describe a very detailed picture and was also to do just what I wanted to do with a load of items put down in front of me.  Some time later he spoke with my brother and sister about what I was like when I was younger.  Six weeks later I met him again and he gave me the diagnosis with a long, detailed peer reviewed report and a one page report for my employer, etc.

Be yourself, try to relax and don't overthink and worry too much. You will be absolutely fine and remember these people are professionals, they will know you'll be nervous but will be kind and understanding. Good luck.

Scripting can be a useful tool when time is limited and you really need to get across important information, such as in the short GP appointment you mentioned or in a job interview. As you have found, without it you are just dismissed or fobbed off and people do not give you time.

In the autism assessment they should give you the time you need to process what they say and formulate a response, repeat the question as many times as you need, allow you to refer to notes if you get really stuck. They will be trained to an extent to look past masking but that will be difficult if you are a master at it. 

If you're anything like me and have spent much of your life continually relying on scripting to get by then it will be a hard habit to break. It isn't something you can switch on and off at will. Sometimes I think that every time I open my mouth what comes out is a mix of previously well rehearsed scripts, not necessarily the rights ones for the circumstances!

Kieran Rose, who is the co-author of academic research on masking and published a recent book on the topic, wrote about his own lifelong experiences of scripting here.

https://theautisticadvocate.com/2018/07/masking-i-am-not-ok/

"For me, personally, the most obvious form of Masking is Scripting.  For every conceivable situation i have a script.  Many of them i keep in my head, I store them on the rolodex of memories I talk about in ‘The inside of Autism‘

Others though have to be created prior to events or engagements, some of them (the horror!), have to be made on the fly."

Just be yourself. I was very anxious beforehand but the people doing the assessment will guide you and they will understand you. It was the first time I ever felt someone actually understood me. It was actually sort of enjoyable!

This isn't that though. It will be relatively guided, not a "okay, sit down and tell me how you're autistic" situation. If they ask a question and your natural reaction would be to hesitate and fidget while you get it straight in your head, you need them to see that rather than you reciting your prepared answer that you've been through 10 times in your head on the way there. 

They told me to try not to mask (which isn’t easy) and to be as unguarded and natural as I could.

Interesting. I thought of it as the opposite of masking - it's a way of making sure I communicate what the issue is and what I want the doctor to do about it. Without the script I go quiet and let them send me away with a vague reassurance and no tests or treatments.

MrSolo said:

I usually find I have to script medical appointments in advance and then memorize the script to get anywhere, but perhaps with this being a couple of hours rather than being kicked out after a few minutes that might not be necessary?

Scripting is masking and this being an autism assessment they very much need to be able to see the real you under the masks. Therefore I wouldn't do any rehearsing or scripting in advance.

If that means you may struggle to answer questions then that should demonstrate any difficulties with communication you may have as an autistic person.

My first session in the assessment was a two hour chat in which they took my life history but they also observed how I interacted at the same time.

They were quite happy for me to have notes so I didn’t forget anything.

I've filled in the forms and got a long time friend to fill in the parts they wanted someone else to fill in. Sent those back a few weeks ago. Apparently my appointment next week will last 2-3 hours and they'll ask me questions about my childhood and my life now.

I usually find I have to script medical appointments in advance and then memorize the script to get anywhere, but perhaps with this being a couple of hours rather than being kicked out after a few minutes that might not be necessary?

Not really. Just focus on how you're going to look after yourself before and after.