Finally had my assessment yesterday

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!

Parents
  • 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.

  • 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!

  • 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.

    The NHS app is seemingly a mixed bag, at the moment, in terms of how much info any given one of us can see. Until recently, I could only see pretty limited information. But my practice then upgraded that (as part of a phased national rollout, as I understood it) to provide much more detail. So, even though you have some degree of access via the app, you may still only be able to see a limited amount of recent, electronic data.

    However, depending on how old you are, there could also still be a potential treasure trove of much older, paper-based records, which won't ever be available via the app, that you haven't seen yet. These are the rules about the app:

    "Patients with online accounts, such as through the NHS App, should be able to read new entries, including free text, in their health record. This applies to future (prospective) record entries and not historic data."

  • I'll have to have a go at getting hold of my old GP then and see what they can find.

    You should request them from your current GP, who will have all of your records, dating back all the way. Records are always transferred when switching between practices (even if they're hundreds of miles apart). 

  • You're welcome - best of luck!

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