Need a little reassurance - Neurobehavioural Assessment

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Dear all,

Thank you all so much for your kind wishes.

Well, thought I would let you all know how it went. (I tried typing this yesterday but lost all the text due to a fusebox issue in my bf's house!)

Just to give you some background first. It was first suggested to me by a mental health charity in the UK called MIND that I might have AS as I had all the symptoms and had done for all of my life. I hadn't really heard of AS before and didn't even know much about autism in general, so I did some research and found that the descriptions fit me exactly - to the extent that it was even a little spooky!! !

MIND recommended I get in touch with a local support group for people with AS, which I did, and also that I ask my university for an assessment with an Educational Psychologist and ask my doctor to be referred for an ASD assessment.

The Educational Psych diagnosed dyslexia, dyspraxia, irlen syndrome and sensory overload. He said he could understand why it was felt that I might have AS, but unfortunately he didn't have the relevant qualification to give me a diagnosis.

After some persistence, my psychiatrists eventually acknowledged that I was on the autistic spectrum - but 'officially' they were not qualified to say where exactly and what I had - whether it was HFA or AS or PDD or whatever, but they agreed to refer me for more 'specific' diagnosis.
After this, I considered myself diagnosed as at the time there was no-one qualified to give more detailed diagnosis in my health authority, so that was as close as I could possibly get. I was told AS was most likely, although this was as much as they could say, offiicially.

Eventually, the Professor who I saw on Thursday came into post. (He only started the neuro-behavioural clinic a month or so ago!). So I was referred to him and his team for a specific and definite official diagnosis.

I turned up at the appointment on Thursday, 9.30am in the morning. It didn't finish until 1.45pm!

Around 9.35ish, me and my support worker and bf were met by a Professor of Psychiatry and Neuro-Behaviour, and also a speech and behavioural specialist and a clinical psychologist who has DISCO training.

As it was impossible for my parents to attend, I had instead provided them in advance with a 51 page report detailing how I fit the diagnostic criteria for AS and also with information on my developmetal history which was given by my Gran and also with the aid of pre-school child-care reports.

They asked me some questions to clarify things from the report I had given them and also asked me some other questions, such as about my tics and stims and did I have hypermobility of joints (no) etc. They also asked me about how my symptoms affect my day to day life and about my experiences of life, work, socialising, education etc.
My support worker and bf also contributed to these topics.

I then had an appointment on my own with the speech and language therapist. We did and exercise where she gave me sequences of shapes and would then give me verbal instructions, like "When I say go, point to the 4th triangle, the first circle to the right of the white square and the last Black square". I did okay at most of these (although I did need to use my Irlen overlay in order to be able to see the shapes in the first place!) although I did get confused on a couple and I also forgot to wait for her to say 'go' a few times.

She then showed me cards of people displaying different facial expressions and I had to say what each expression was. Some of these were really easy and really exaggerated! But some really confused me too.

Then it advanced to ones where I had to find the 'story' behind the picture. I managed to come up with a 'story' for most of these, although I was pretty confused and some I couldn't make sense of at all!

She then asked me to put series of pictures in order and tell her the story that they made. I managed to do these, but only by looking at the objects in the pictures, not the people or their body language. e.g. there was one set of pictures with a man and child washing up dishes. (presumably they are meant to represent father and son). I could only put these in order because I looked at the number of dishes on the side of the sink waiting to be washed, and the number which had been washed and were draining on the rack, in each picture. I got the order right, but confessed to the therapist how I did it.
She was okay with this - she said that it is good that, although it shows I don't understand body language, I have developed good and logical coping mechanisms for this.

We also just talked about my day-to-day problems and the fact that something as simple as the bus journey to the hospital that day had required a lot of planning for me, and then it went wrong because the bus I wanted was not displayed on the electronic GPS display screen so I thought I'd missed it and I panicked because my plans had just completely fallen apart!
I walked down to a further bus stop to meet my bf and then saw the bus I wanted to get going round the corner. We sprinted to the bus stop and managed to get on the bus. I told the driver, politely, that his bus was not displayed on the electronic screen. He replied "yeah, I'm in stealth mode". I could make no sense of this reply! I get that he was trying to be 'light-hearted' but the point I was trying to make is that this was a problem and needed to be fixed - I felt that a more appropriate response would have been for him to radio head office and tell them so they could fix the problem so that other people wouldn't get confused as to whether or not they had missed the bus. People are so illogical!! !

She also showed me some idioms and I had to choose from multiple choice answers as to what each meant. Some I knew, some I had no idea. And in some cases I found the questions ambigious and told her that I didn't know what it meant. She was fine about this though and didn't get annoyed or tell me I was stupid or anything. She even closed the window because the noise was intefering with my sensory overload and even offered to take the clock (whose ticking was also messing with my sensory overload) off the wall!!

After a short break for something to eat, I then had a meeting with the Professor and the Clinical Psych. They asked for a history of my general health and also about obsessive beaviour and 'all consuming' interests etc. They also asked about my dyslexia and dyspraxia and gave me the AQ and EQ questionnaires to complete. They asked more questions before letting me have another break.

After the break, the Professor asked if he could speak to my bf and support worker alone. I didn't mind as my support worker had already suggested this on the basis that usually, if parents were present, the team would speak to them separately, and as they were kind of there 'in loco parentis' it made sense to do the same. I had no problem with this, and they know all my secrets anyway! (Which I guess means they are not secrets! lol).

After about 30mins, the Professor called me back into the room where my bf, support worker and the three specialists were waiting.

The specialists said that I definitely have AS and that they were very confident of this and they all agreed. They will each write me a report to give to my psychiatrist and social worker and also the housing department recommending that I need appropriate support especially with social issues and managing sensory overload and change. Hopefully, I will have someone who I can phone anytime, but who I only need to see in person (unless there is an emergency) once a week or even once a fortnight - this would be great. Although, sadly, there is no 'official' support for people with ASDs in my area, although the team are hoping to set something up soon.

So it was fine in the end, and I got the outcome I wanted - which was a clear official diagnosis!

Thanks so much for your supportive works, I really appreciate your kindness.

girl7000

Good for you!

I think this is what I'm in for when I'm referred to a specialist. It's good to know what might go on in the appointment when I get one. Thanks for that!

You're very welcome

I hope it goes as well for you as it did for me.