I no longer identify as Asperger + ADHD waiting list

Hello, new to the community and wondering if that's anyone on a similar boat.  I'm in my late 30s, assigned female at birth and from when I was a teenager to young adult I was given a diagnosis of Asperger.  Now as many know, the term Asperger is no longer used or has folded into ASD, but over time I began to identify signs of ADHD both as I am now and potentially from when I was a child (for example I was put on a referral unit for behavioral issues between ages 8-9, and when I got back to mainstream I'd be still be fidgeting and daydreaming to the point of needing nudging, then college saw me falling behind so much I had a "cause for concern" form) so I am currently on a waiting list for more than 3 years now and expect to be on it for at least another 1 or 2 with the way the services in my area are going.  Of course I do still have my signs of autism especially eye contact, sensory etc and I am aware that ADHD does overlap, but I still have a lot of difficulty with concentrating on things, or feeling like I think about millions of things at once leading to stuff like procrastinating and task paralysis, and that indeed has a knock on effect at home especially, and at work I am having difficulty with time management.  To give an idea I've put off writing a thread like this multiple times.   

Even back in the day I had a hard time accepting my Asperger diagnosis on the grounds of the heavy "nerd" or "not like other girls" stereotyping and now I no longer even wish for it to be on my medical records because I feel like my autism has never been "mild" or "high-functioning" (note I also despise using these terms), but rather my current needs are variable; in fact the last time I checked Asperger was what they called autism without other learning difficulties, but I had been non-verbal for a year or so as a toddler and had other delays!  Over years I used to need my mum to be with me or when I had my first paid job I needed a job coach to begin with.  I was also given that false sense of being successful, being smart and all but I've never felt that I could fit in even with other people with the same or similar diagnosis.

Granted, I now live with my fiancé who is also autistic and last year we bought a house, so in some ways I have some degrees of independence and we rely on each other for different things, such as him reminding me to even eat something for breakfast.  I currently only hold a few SEN documents dating 2001 only just stating that I have Asperger and had been known to health authorities as early on as 2 or 3 years old, but not any full reports and I know my mum had been keeping these from me but also saying "it was the teachers that diagnosed", so that's lead me to believe I might not have had a proper assessment.  in 2009 I had medical assessments such as an MRI scan in an attempt to get a freedom pass which I was denied, and the doctor dealing with this also took my Asperger diagnosis into account.    

My ADHD referral letter does say that I have "an established diagnosis of Asperger" and that I don't need a new autism assessment, but sometime last year when I tried to reach out to the services that I've been referred to they said in their email that they can "re-evaluate the ASD diagnosis", so while I'm rather confused on that part I guess there's not a lot I can do about that for now.  I'm just wondering if it's possible to convince my GP or whatever to find any records of it and then have them renamed to ASD for the time being.  I'm worried about being dismissed about ADHD and that I'd have wasted several years waiting for the assessment, because of overlap, but I stand firm with my belief that my current difficulties go more in line with ADHD rather than ASD.  

Sorry if this seems like lots of waffle, and I have more to say but have to go to bed now, but thanks for looking and if anyone has any input.

Parents
  • Hi, I think it would be possible to have your records changed from Aspergers to ASD. The diagnosis of Aspergers isn’t used anymore, many people diagnosed with it don’t identify by it as Dr Asperger had links to the Nazi’s. I would tell the GP that this is why you would like your record altered to the correct definition.

    I am in no way a professional, you do have what seems to be ASD traits, when you were diagnosed you could only be diagnosed with ADHD or ASD, not both. When the DSM-5 was introduced it became possible to be diagnosed with both, I believe it’s known as AUDHD. As I said I’m not a professional and there is a lot of overlap with both conditions.

  • I would tell the GP that this is why you would like your record altered to the correct definition.

    I agree - your GP should be able to update the terms on your medical record to reflect the current terminology used in the DSM5 since it was changed from Aspergers in 2013.

    I'm worried about being dismissed about ADHD

    Have a search online for "free online ADHD test", take a few of the tests and make a note of the results (screen shot them maybe) and present them to your doctor if they support your thoughts that you are ADHD too.

    If you are concerned about not being autistic / Aspergers then do the same thing for "free online autism test" and take the tests to see how you score - this will be more for your own peace of mind but why not make your own screen shots for your personal records too in case you ever want to look back.

    One good thing these tests will do is highlight the areas you have issues with - make a separate list of these and you can reseach these traits and find ways to manage them better and you will start to find an improvement in quality of life fairly quickly.

    Of course all this is just the opinions of some random person off the internet so please do your own research before considering taking any of this advice.

Reply
  • I would tell the GP that this is why you would like your record altered to the correct definition.

    I agree - your GP should be able to update the terms on your medical record to reflect the current terminology used in the DSM5 since it was changed from Aspergers in 2013.

    I'm worried about being dismissed about ADHD

    Have a search online for "free online ADHD test", take a few of the tests and make a note of the results (screen shot them maybe) and present them to your doctor if they support your thoughts that you are ADHD too.

    If you are concerned about not being autistic / Aspergers then do the same thing for "free online autism test" and take the tests to see how you score - this will be more for your own peace of mind but why not make your own screen shots for your personal records too in case you ever want to look back.

    One good thing these tests will do is highlight the areas you have issues with - make a separate list of these and you can reseach these traits and find ways to manage them better and you will start to find an improvement in quality of life fairly quickly.

    Of course all this is just the opinions of some random person off the internet so please do your own research before considering taking any of this advice.

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