Published on 12, July, 2020
Hi. New here. I’ve been waiting for an assessment for ages and have received communication that I should get an appointment within the next few weeks. The process has been outsourced to The OWL Centre but it’s through the NHS. I am in Dorset.
Anyways I’m just suddenly feeling super anxious about the whole thing cos I don’t really know what the process will entail and also have the “what if they say I’m not autistic?” panic going on too.
I have thought I am autistic for over a decade and have identified as such for the last couple of years. I would like the formal diagnosis though because sometimes I get a sense that people don’t believe me when I explain how I experience the world (is that common?)
Any info and reassurance would be very welcome!
Thanks :)
Hi,
Welcome home. Exciting news about the appointment, sounds like you've been waiting a really long time for it
It's totally normal to feel anxious about the process and the ultimate result. I'm happy to provide details on the assessment if that would reduce your anxiety?
Regardless of the outcome, you can still identify as autistic. I completely understand that you want a formal diagnosis however if you don't get it then that doesn't suddenly stop you from being autistic, just means the person who assessed you wasn't very intelligent. Yes very common for people not to realise how difficult life is for us, in my opinion getting a diagnosis doesn't always help with that, some people just really don't have a clue
Alisha xx
Thank you so much you’ve made me laugh and cry and feel better and welcome all at the same time!
I’m a bit anxious that they won’t ask the right questions or give me space to elaborate where necessary. Also I have my sister who is five years older than me to come with me but nothing from parents or childhood apart from my own recollections. I’m 42, my parents are not interested. I worry I won’t have enough concrete evidence outside of my own experience if that makes sense?
Again thank you so much, it’s so nice to be believed without having to justify or explain!
If they don't ask the right questions then at the end say something like "I'm really sorry however I'd like to ensure that i get the correct diagnosis and we haven't had a chance to talk about... which is one of the main reasons why I'm considering I may be autistic. Would you mind if I explain that?" How the assessment works is that one person writes down everything that is said so that would then have to be included in their decision.
During mine they repeatedly told me that I was giving good eye contact, so I explained that it seemed like that however actually i was looking between their eyes because i find eye contact really uncomfortable and when i got the diagnostic report after, it had a paragraph discussing that. So try and speak up, I know that's not easy but the more honest you can be, the higher chance you will get the diagnosis that you deserve
Glad you will have the support from your sister and I'm sorry that your parents have reacted that way. You should be totally fine without your parents support. You can explain how you feel now and what's led you to wanting your diagnosis. Your sister might remember stuff whilst you are there as well. I think it's quite common for adults to not have their parents support so they probably deal with that all the time
ICD10. The new one that should be used is 11
Oh okay, thank you. I have no clue about these things no idea what form they would be using, I know there are a few diagnostic tools I think the place I have been referred to uses ADOS but if I’m honest I’m not really sure how that compares/differs to an of the others
Wish you all the best. Just go prepared and don’t expect them to fully understand your difficulties but you very may well get a decent person who knows what they are on about. Also make sure they are using the most recent diagnostic form. They used an out of date one for my assessment. I think the current one is 11 (I can’t remember the exact form off my head but I will post what it is tomorrow)
Write notes. Got ya. Good advice, thank you. And yeah I don’t have a lot of faith in their capacity to see it to be honest. I’m super lucky that my GP completely does but so many other health professionals don’t seem to get it at all!
I got this as well. It also shows that there is a long way to go for the assessors to note that eye contact is also masked by autistics.
They really are looking for severe autism. They also noted my sense of humour (it’s dark lol) apparently you can’t have one with autism either.
They will be looking for extreme symptoms so you will have to vigilant and get your point across. Do write down a list of your struggles.
also I’ve noted, the nhs don’t seem to realise that autism is developmental. They assume you are born with symptoms that don’t develop. Believe me, they do and can crop up as you get older.
They seem to focus on your childhood as well and believe that the developmental stage and milestones you’ve successfully navigated are signs you ain’t autistic.
good luck with your assessment and do prepare. Write notes. I didn’t prepare because I assumed that they would instinctively see how autistic I was. They are incredibly ridgid with how they view autism and this will change and you may be lucky and have a progressive assessor who will be able to do so.
That’s really helpful and reassuring thank you so much