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Awaiting Adult (42 Yrs old) ASD Assessment

NAS79652

Hello all, I hope you are well.

I have several concerns regarding the ASD assessment and I wondered if you guys had any advise or tips.

1) I went into care at 15 (self referred) and have zero contact or information about my life before the age of 18 - its like I didn't exist - no school reports, photos, journal entries or biological relationships to reflect upon my childhood experience - will this affect diagnosis? I have been warned that I may only receive a "working Diagnosis" due to being unable to "prove" traits existed in childhood. Prove = to provide evidence of and all I have in my memory's and perception and I am unsure this will meet the criteria required.

2) I cant research the process or the ASD assessment centre - I like to get photos inside buildings of new places so I know where to go when inside (toilets) check out lighting and what type of clocks they use, where to wait (if I'm waiting).

Well I just cant plan appropriately - I'm conscious of assessment bias if I do too much research on the mechanics of the assessment but I have so many other questions outstanding that I would like to resolve prior to attending.

Any advise - what happens socially at these assessment interactions?

Many thanks for your time and patients  

  • I recall when my daughter got the paperwork for her assessment, there was a booklet showing the rooms in the centre. There was also the offer of viewing beforehand if required, so I’m sure you could ask to do the same.

    The assessment is mostly made up of interviews with one or two people. You may perform some simple tasks. You will get a break half way through. 

  • Hiya,

    I`m 41 and having a similar dillemma. I'm speaking to a therapist and doing history timelines etc - but there are some big gaps in what I know. My mum suffers with depression, so I`m trying not to bother her with it all too much.

    Do you have any particular medical history that might be relevant (A&E trips, illnesses that had any note?) If you have the NHS app you can get hold of your GP record going back as far as you do (in theory) - but to top that up I`ve also done a Subject Access Request with my local hospital to try and get more dates and information. I know I was a late bedwetter and used to throw awful tantrums about having to wear an eye patch as a kid - so I`m trying to place dates. I also know I went to A&E for a hip injury and watched Angela Rippon host a quiz show based on tennis... I`ve no idea when this was though (So gawd knows why I remember the quiz!)

    As with the place and the process, try not to worry. The assessment centre will probably be the usual grubby white walled place medical facilities usually are. For other things - use the clock on your phone and take/use whatever is going to make you feel the most comfortable. Be our pioneer - find that info for all of us!

    Good luck!

  • Hello 79652 and welcome to the forum.

    I was assessed in my mid-sixties and certainly couldn't produce anyone who knew me as a child; however, it wasn't a problem. I used to throw tantrums aged about four or five so talked about that - the reasons, the trauma, the sheer bloody horror of it all. I don't think I'd ever talked about that before and was surprised how vivid the memory was. 

    My late diagnosis has been a revelation, it's taken a while to sink in but I'm really glad I did it.

    Hope it all goes well for you,

    Ben

  • I would not have imagined that 'legal system' type evidence would be required for any clinical diagnosis. The DSM criteria require indications that autistic traits extend into early childhood, not that there is a requirement for documentary evidence to exist. I was diagnosed at 59 and only have an aunt in her 90s, who was not able to give 'evidence', who remembers me as a young child; so my saying that I was selectively mute when starting infant school, liked to spin a lot and enjoyed being in confined spaces, was taken as indicating my childhood autistic traits.

  • in reply to Peter

    Thank you for your response Peter.

    I know I am going to have to call them - which I was trying to avoid. Just with the invention of google maps and allocated interior photos of most establishments, I was hoping to research privately, with minimal interaction.

    I would have sought a diagnosis sooner if it didn't involve so much peopling. THIS irony I actually get :-)

  • in reply to NAS79230

    Thank you for your response and indeed, this fits with my understanding.

    I am hopeful the additional hearing, sight and speech NHS interventions my mother sought from 8months to 5.5 years of age are on record to support, but as a student nurse, my exposure of records to date does not indicate easy retrieval. 

  • The layout of the assessment centre and its interior decor is not going to be relevant to the assessment process so there is no reason you shouldn't ask them about this if it helps put your mind at ease.

    The autism test is generally a series of interviews. Expect to be asked questions about yourself and your youth. You may be asked to do some simple exercises at the table involving small props or books on the table.

    In practice I think you'll find a 'working diagnosis' is still a diagnosis for all purposes. The doctors are just trying to cover themselves most likely.

  • Diagnosing autism spectrum disorder (ASD) can be difficult because there is no medical test, like a blood test, to diagnose the disorder. Doctors look at the child's developmental history and behavior to make a diagnosis. ASD can sometimes be detected at 18 months of age or younger.