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Freaking out a bit after receiving my assessment report

Kitsune

Apologies in advance as this is me needing to sound off!

following diagnosis with autism spectrum disorder last week I didn’t really feel anything, I felt that I should feel something, but I didn’t. 

I received my diagnosis/assessment report in the post yesterday and reading it in black and while in all it’s gory detail has given me a horrible restless figity agitated feeling.

Its difficult reading the reality of how I present to an expert in assessing and diagnosing ASD. Different to my own perception of myself, different to people in the past who thought I was just an annoying person. It hurt to read a professional description of how impaired I am in social communication and interaction.

Although I was diagnosed with ASD F84.5 ICD-10 (Aspergers). On the ADOS I scored above the threshold for Autism on every component. It says in bold at the end of my report that my communication and social interaction total score is 12, which is above the threshold level for autism (they can’t diagnose me with autism as I didn’t have any delays in cognition or language) but really? are my social skills really that horrific?! Well apparently they are! 

To add to this I also had an acquired brain injury in an RTA nearly 12 years ago which unfortunately has left me with neurological sequelae. So I’ve now entered the world of dual neurological diagnosis. I feel as though I may as well just have mashed potato in between my ears! That’s how much use my brain is now!

In my early 20’s, before the ABI I used to like my brain. I was so smart back then and very successful in academia, qualifying to Masters level. I never had many friends but it didn’t matter because I was intelligent. Now I certainly don’t like my brain. Far from believing it is the amazing machine that it once was, I have to accept that I have not one but two neurological disabilities, both as disabling as the other in different but also overlapping ways. 

And then there’s the issue of fitting in. Where do I fit in? I certainly don’t fit in with neurotypicals! I don’t fit in with fellow abi sufferers either, already been down that road, I have social issues that they just don’t have. I don’t fit in with fellow ASD sufferers either because I also have abi. My ASD diagnosis hasn’t allowed me to finally ‘fit in’ somewhere. I’m still that awkward girl in the corner that no one really wants to be friends with.

Dont get me wrong. I’m sure I’ll be ok in the end. I know rationally that I’m (somehow) still a relatively high functioning individual and this ASD diagnosis doesn’t actually change anything, it just gives a label and an explanation to something that I have suffered my whole life. And I know in the long term that having this ASD diagnosis will allow me to work on better managing my impairments and improving my life. But right now I’m finding it a lot to take in and quite overwhelming.

Thanks for reading:-)

  • in reply to Trainspotter

    Hi Trainspotter,

    Thank you replying and for your reassurance.

    I think the diagnosis for what was previously known as Aspergers is a bit of a grey area these days. In my opinion it needs to be properly clarified. My specific diagnosis was ‘Autism spectrum disorder (F84.5) according to the international classification of Diseases, 10th Edition (ICD-10)’. F84.5 is the code for Asperger’s syndrome in the ICD-10. Also for clarification the ADOS has two levels of ‘cut off’ scores one for Autism Spectrum Disorder and a higher one for Autism. That said, I certainly don’t view being autistic as anything to be ashamed of. It’s more that I see the fact that I scored above the higher of the two thresholds as evidence of an exacerbation of the already nightmarish neurological cocktail that I am carrying. Basically I’m feeling sorry for myself. I’m not suggesting there is any shame to be felt for suffering from any disorder.

    I don’t think I’ve ever really felt that I’ve fitted in anywhere, not truely. The ASD diagnosis does as you say help to highlight places where I need help or understanding. But you know what, I’m scared of ‘coming out’ as ASD. I feel like I’m collecting neurological disorders at the moment and I feel like there’s a limit to how much stuff people can tolerate.

  • Several things to consider here.

    First, the diagnosis has not changed you.  Not one bit.  You are still the same person you were before, with all the talents, gifts, abilities, problems and faults you had before.

    Second, 'aspergers' is autism.  If you have an aspergers profile, you are autistic.   A diagnosis of  Aspergers is not used any more, although the ICD10 refers to an 'aspergers' profile, characteristics are what you have said in that there is little, if any, delay in language or cognition, but make no mistake autism it is .  So do not worry about it at all.  I am proud to call myself 'autistic', it is nothing to be ashamed of any more than being not gifted at sport is anything to be ashamed of.  It is just how you are and what you are.

    Thirdly, you fit in the places you fitted in before.  Your diagnosis however will highlight to you the places you need help and/or understanding.  And if you let others know, it will help show them the difficulties you may have.  The thing that a diagnosis can help to change is other peoples attitude to you.  You may have been noted as a bit 'strange' to neurotypicals, and the diagnosis can help them to understand why you appear to them a bit 'strange', if you choose to let them know. I have few people who I think of as friends, but they all know and accept me for what I am.

    But if you choose not to let people know, they will always treat you the same as they always have, and this may create problems for you in knowing that you cannot help the way you are.