Published on 12, July, 2020
I don't feel like it went well at all =(
I'm not contact with most of my family for various reasons, and so don't really have anyone thay can corroborate my traits having been there since childhood. Before my assessment I explained this, and gave phone numbers for my uncle (who I'm not sure how helpful he'd be, due to family issues I'm not sure he saw me much as a young kid), and a high school friend. I also spent a few hours writing down notes about all the traits and my struggles that I could think of. I was under the assumption people would have been contact and questions asked, plus my list read beforehand, and so didn't being them in to help me as I maybe should have.
I found it incredibly difficult thinking of a lot of it on the spot, and many of the questions didn't really lead to me discussing some of what was in my initial list. And so because I'd had a poor relationship with somewhat emotionally abusive parents, I was told that "I have autistic traits, but they could have been because of my parents mistreatment and it isn't clear that I have ASD". I waa also basically told that if is been assessed some years ago I'd have been diagnosed with Aspergers, but by today's DSM criteria, unless they get more info from my uncle and friend to prove early childhood traits, I don't get a diagnosis.
I feel very disheartened by this. A lot of my parents mistreatment of me, I feel, was exactly because I showed autistic traits, not the cause of them (such as them getting angry at me for replying words and phrases, or sometimes even sounds I'd heard from others, repeatedly listening to the same songs over and over, spending too much time in my room by myself, or the fact I'd flat out refuse to eat many foods because of their texture.)
I'm not sure what my next steps should be.
Have others struggled in similar ways to me? Or, managed go get a diagbosis despite not having anyone to prove early childhood experiences?
Is it worth me trying to seek out a 2nd opinion, or the fact I'm no contact with family just mean I get the same response?
Because of my troubles explaining myself in a verbal manner, I found it very stressful today and I'm scared also that seeking a 2nd opinion would just result in exactly the same.
Thanks in advance for any advice!
Can you go back to them with the list you created? When I had my assessment in Feb this year, aged 51, I told them there was nobody from school I keep in contact with, and my family couldn't be approached for various reasons, so I got my longest-standing friend of 25 years to speak with them. I told them about my school experiences that I could remember.The only thing I had were school reports from secondary school, but they didn't use them. Might part of the issue with your parents, have been that one/both of them was autistic too? (this would also be evidence.) When I was going through my assessments, it occurred to me that my mum is probably autistic and a lot of her violent behaviour to me as a child was due to her responses to me. I told the assessor this.
I don't think you are being told you don't have autism, just that they don't have enough evidence to apply the diagnosis. So, could you find out what evidence they need? Or is the issue that you can't remember enough of your childhood to give them the evidence they need? It is common, unfortunately, for late-diagnosed autists to have experienced bullying, abuse and trauma responses. They just want to establish that that autistic behaviour of yours was there before the trauma - which can be hard to unpack without a good counsellor. We probably all know people who have been mis-diagnosed with other things, so their caution could be viewed as a positive.
Or, can you seek assessment by another means? From what I know of the assessment process, they interview you and the person who knows you best/when you were a child, do the practical test, write a report, take it to their team meeting and present the evidence. If there isn't enough evidence the team decide what advice to give. My experience was it was the decision of 3 people - the 1 that did the background gathering, the one that did the practical test, and their manager. All 3 were listed on the report.
You know best. Maybe you just need to find an assessor who can 'speak your language'. I hope you manage to get this resolved.
Fiona said:I don't think you are being told you don't have autism, just that they don't have enough evidence to apply the diagnosis. So, could you find out what evidence they need?
Fiona has hit the nail on the head - could you ask them what evidence they need? It is OK to ask them, This kind of chasing up is hard for us, but do you have someone who can advocate for you? I don't mean someone who can provide evidence, but someone who can speak up for you and ask for this information when our tongues get tied (as they do).
That could be a good idea.
I think I should be getting a phone call today, I'll ask what they needed and maybe ask if I may be able to come back and discuss things more with better preparation.