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!
When it comes to people believing, I have to disappoint you. I mean, many diagnosed autistics hear the two standard answers “you don’t look autistic” and “we all are a little bit autistic” - which is not true. It only means that many allistic people have some of the traits that autism spectrum consists of. But it doesn’t mean they are a little bit autistic. Or another stupid answer is: “it’s trendy now, you just want attention”. I don’t mean it’s not worth to get a diagnosis to be sure of who you are (although sometimes it’s not working either) I’m just saying that other people often do not believe anyway, mostly due to lack of knowledge and their own stereotypes.
Yeah, I understand that they do need supporting evidence from my childhood and why.
Sadly, getting in touch with family is not an option for me. My mum passed away some years ago. My dad is a no-go, as he has caused me a lot of distress throughout my life to put it mildly and is the main reason in no contact with the rest; I can't trust that any of them won't go back to him, and he'll start Harassing me and my husbands family as well.
I've nothing from my childhood, my parents didn't really seem to keep anything, or if they did, I never saw it. My doctors notes I've been through on the NHS app, and a lot of it is blank or gives no details. Like one is that I failed a hearing test, but no context or anything else given.
I handed over what school reports I could, but my first primary school closed down a long time ago and I've nothing from there, so only reports from year 3 onwards. I even tried asking the local council if tjeyd have had any records from then. It's been quite a nightmare trying to get hold of anything that could help me.
That had occurred to me, but I guess I also worried incase it was "cheating" somehow to have known in advance what they'd ask. Which.. maybe sounds silly. But I'll definitely ask if I go ahead with trying to get a second opinion!
Thankyou!
Thanks for sharing the book! I find your comment very helpful!
That's true
I think it's a mix of imposter syndrome, and also knowing that a lot of people won't believe you if you haven't been fully diagnosed, that made me feel going and seeking one out is the best thing to do, incase I ever actually need it for accommodations in the future.
In most online spaces I'm part of they're very accepting of self-diagmosis and that's been great and very helpful. But I would also like to be able to discuss things with my partners family too, and I think my main worry is that they won't believe me if I haven't been diagnosed. (Thay could be me overworrying potentially. They're lovely people. But I've been dismissed so many times over various things in life that its just a default worry for me I guess?)
I'm sorry to hear that things went badly for you :(
Regarding seeking a second opinion, the NAS advises:
"If you disagree with the outcome of the assessment, you may want to raise your concerns directly with the team of professionals who assessed you. You can consider requesting a second opinion by going to your GP if you have had an assessment through the NHS."
From: What happens during an autism assessment > Assessment results and report
However, I'm afraid that the assessors are quite right in saying that they need to see sufficient evidence of autism also having been present during your childhood (whether they are following either the DSM or ICD classification standards).
So - before pursuing a second opinion - I suggest talking more with your family, to see whether they can provide more helpful information.
It might also be helpful to go through your full medical records to see whether anything has been recorded there that could serve as supporting evidence. Also, if your parents kept a "baby book" to record your childhood history, what's written in there could be useful for the same reason.
You can get a copy of your medical records by requesting them from your GP. It could take a while, as they might be being kept in archive storage. And they would either need to let you inspect them with someone else present in the room (on their premises) or need to make copies for you, as they're not allowed to let you borrow them. I did this and found it very helpful, with clear instances having been recorded during my childhood of a range of things that supported my autism diagnosis (such as, for example, some of my sensory sensitivities).
Of course, you now also know what to expect during an assessment, so you could make sure you're better prepared, if you have a second one, in terms of having your notes with you. You might also be able to ask for advance notice of their questions, so that you can also prepare for those properly, due to not being able to think on the spot (I always have the same issue in any medical setting, so I can fully appreciate how upset you feel about this).
I wish you all the best, but should also add, in closing, that you can still gain a lot of benefit from a self realisation / self diagnosis that you are autistic, even if you're not able to get an official diagnosis.
Hi Aurielle,
Firstly, you will always be welcome here.
I'm reading a book called "How Not to Fit In: An Unapologetic Guide to Navigating Autism and ADHD". They talk of the important moment being the moment of realisation, and not the diagnosis. They are very pro self identification. I am only part way through, but it sounds like it could help you. With this moment in mind, which you have already had, what do you think that you really need out of an official diagnosis?
Also, from what you said, they have soft-diagnosed you with Asperger's, even though that is not 'official'. Also, they have not said that you are not autistic. They are almost saying that they do not have enough information yet. If you do not decide to get a second opinion, I would keep those two facts in mind and be self identifying.
Hi and welcome! I have never even tried to seek a diagnosis, so can’t really say if it’s worth or not. When it comes to my family I was told many times that I’m a nerdy weirdo because I sit alone in the room and study my favorite things (at one time foreign language, at other time trams, models, history, etc, then encyclopedias etc or just creating something- painting, other manual work), I was also told that it’s annoying that I’m so dumb I take everything literally, that I don’t understand when someone is kidding or serious or annoyed etc. I was also told I’m terrible at social interactions, oversharing, being too direct. But when I informed my mom that my psychologist told me I’m probably autistic, she said that the psychologist is stupid. I remember from my childhood my teachers told my mom the suspect I’m autistic and she ignored that. I remember she prevented me from seeing a psychologist when I was a teenager and had awful meltdowns. So I suspect she knows that all along and keeps it secret from me. So I feel I relate in terms of family being unsupportive with getting diagnosis. I found an article about getting diagnosis, I couldn’t paste the link but I took screenshots of a part of it, maybe it helps a bit.