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ASD diagnosis rejected

Mia151515

Hi everyone,

Today I had my feedback from my ASD assessment and i've been told they're not diagnosing me and they think my symptoms are just down to anxiety. 

As you can imagine i'm extremely upset about this and been crying all day as I know deep down that I am autistic after doing nearly 2 years of research reading medical books, listening to podcasts and speaking with other autistic people. They told me to speak to my GP to possibly up my antidepressants and speak to them about anxiety (which i have already been doing for 9 years and they've got me nowhere). I can only imagine this is down to the assessment criteria being so outdated and not suited to late diagnosing autistic women. 

I am now looking at going down the private diagnostic route as I am not happy with my result from the NHS. 

I was just interested to see if anyone on here had any experiences with private ASD diagnosis' (either alone or following from a rejection of NHS diagnosis). Or if there were any recommendations, tips or advice to cheer me up as I dont have many other people to talk about this with so feeling pretty low Disappointed

Thanks in advance !!

Parents

  • Hello. 

    Sorry to hear this happened to you. I got my diagnosis last year and I was a pile of nerves before it was confirmed. I totally understand how you're feeling, if my diagnosis had been rejected I'd be devastated as well. 

    I had self diagnosed for a few years before I got my formal diagnosis. Once I started learning about ASD, it was like everything suddenly clicked. It explained so much, and it made so much sense: Like, "I'm not broken, I'm just wired a bit differently".  A negative diagnosis would've been devastating and completely invalidating of my internal experiences. 

    Unfortunately, I hear that being misdiagnosed is very common, especially in adults and even more so for women, as a lot of so-called professionals have outdated ideas of autism and do not account for masking. They think, you can't be autistic, you make good eye contact! You can socialise! You have a relationship, a job, etc, etc.

    Please do get a second opinion, or even a third, until you find a diagnosis that you're happy with and feels right to you. 

    I have a tip that may help you. In my case, I started journalling "reasons why I might be in the autistic spectrum" prior to my assessment. I recounted my life experiences from childhood, as a bullet point list. It ended up being an 18 pages long.

    During the assessment I ask if I could forward that list to them. They then told me in the diagnosis session that it really helped, that she had discussed it with her supervisor as there were some things that haven't shown up during the assessment call but my list covered them well.

    Lastly, if you're still looking for a private assessment, I suggest you try 

    https://www.problemshared.net/

    They work with all the private health providers and also NHS. They were amazing for on my ASD diagnosis, and my partner also got diagnosed with ADHD through them.

    Good luck!

Reply

  • Hello. 

    Sorry to hear this happened to you. I got my diagnosis last year and I was a pile of nerves before it was confirmed. I totally understand how you're feeling, if my diagnosis had been rejected I'd be devastated as well. 

    I had self diagnosed for a few years before I got my formal diagnosis. Once I started learning about ASD, it was like everything suddenly clicked. It explained so much, and it made so much sense: Like, "I'm not broken, I'm just wired a bit differently".  A negative diagnosis would've been devastating and completely invalidating of my internal experiences. 

    Unfortunately, I hear that being misdiagnosed is very common, especially in adults and even more so for women, as a lot of so-called professionals have outdated ideas of autism and do not account for masking. They think, you can't be autistic, you make good eye contact! You can socialise! You have a relationship, a job, etc, etc.

    Please do get a second opinion, or even a third, until you find a diagnosis that you're happy with and feels right to you. 

    I have a tip that may help you. In my case, I started journalling "reasons why I might be in the autistic spectrum" prior to my assessment. I recounted my life experiences from childhood, as a bullet point list. It ended up being an 18 pages long.

    During the assessment I ask if I could forward that list to them. They then told me in the diagnosis session that it really helped, that she had discussed it with her supervisor as there were some things that haven't shown up during the assessment call but my list covered them well.

    Lastly, if you're still looking for a private assessment, I suggest you try 

    https://www.problemshared.net/

    They work with all the private health providers and also NHS. They were amazing for on my ASD diagnosis, and my partner also got diagnosed with ADHD through them.

    Good luck!

Children
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