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Re-affirming my diagnosis as level 1 (Aspie), am I faking?

SJ7

Ever since my initial diagnosis back in early March as ASD level 1 (previously Asperger's syndrome) and i'm doubting the results. I got the cut-off threshold of 7 in the DSM-V ADOS-2 Module 4 assessment which is just the tip of what diagnose you with ASD which kinda increased my doubt. I tried to go back to the psychiatrist and he told me he tried not to "over diagnose" and to actually go for the lower score wherever possible and he still couldn't go below the cut-off score of 7... I still went for a second opinion and got the same result. I've been on and off regarding this for some time until this week.

We had the 4th International Autism Conference happening this week and I decided to visit and explore. There were many entities and Autism centers that brough few of their students to show case their work... Upon interacting with them I can clearly see the difference in intellect... After all autism is a spectrum and based on the DSM-V, Asperger's usually is with higher IQ and is kind of it's own category... Funny enough, none wanted to believe that I'm actually autistic just because I speak well, dress well and keep good eye contact...

The thing I hated the most is when I say "i'm on the spectrum", the person I'm talking to cuts me off and says "Aren't we all?" It immediately makes me invalidated. Seeing all of those students today and having these comments made me self doubt myself again. I had to go back and review my results just to make sure I'm not just faking.

One of the things I had to go through is an IQ test (WAIS-IV assessment) which I've done a month ago but just got the results 2 days ago. According to it I have a very superior IQ which I assume is the main reason I'm able to mask my traits so well and adapt in society. However what affirms my autism is the ADOS test results itself because in it I was unable to really mask as I was in a new scenario that I never had a script for. For example, when doing the blocks assessment, I thought I did great. In this assessment you are required to align the blocks and request more blocks if needed. I aligned the blocks and noticed more blocks further from me which I reached out to and finished the assessment. Apparently this is how Autistic individuals do it. How? The assessor tells you to ask for more blocks if needed, I didn't because I clearly saw them there even though they weren't directly in front of me. I extended my arms to reach out to them. The other thing is that while doing so, I never made eye contact with the assessor, even in the after-assessment questions, I kept looking at the blocks while answering him. It never occurred to me to look at him while answering because again, that's how an autistic person would do. (because of this I have updated my script to look at the person that is asking me something even while doing something such as an assessment!)... This is one example but what I did was an occurring thing during my diagnosis/life...

Thinking about my results in that manner helps me accept my diagnosis more and accept the results, however i'm still upset at how the community think that we are faking... I heard about self-diagnosis and how this forum here accepts them (or at least that's what I heard some of the people say). However I think it might not be ideal to self-diagnose if you haven't done extensive research because if it wasn't for the ADOS test, i would never have found my issue about social reciprocal interaction which is one of the biggest indicators of autism. Furthermore, general self-diagnosis from social media videos represents the wrong image about actual autistic individuals and it can be more harmful than good...

I have actual hidden challenges that I am unable to get accommodated for because of the increased number of individuals that claim they are autistic so now they only take cases that are of level 2 and 3 (they used to accept level 1 before)... I understand some areas are harder to apply for an actual diagnosis and I want to empower those who are actually autistic for self-diagnosis, but it's just unfortunate for those who try to benefit from the system...

I would like to hear from those "aspies" with higher IQ and how they are perceived after their diagnosis...

Parents

  • I was diagnosed in early 2023 with Autistic Spectrum Condition, even then the term Asbergers had been dropped by UK medical professionals. Im 68 now. I don’t understand all the levels you refer to, it feels like they put us into leagues like football for example, some people being Premier League others the amateur grass roots not-much-hopers, I think that is insulting and divisive as we all deserve the same respect and care regardless of our diagnosis, or not, despite differences in levels, in IQ, in the descriptive terms which are used  

    I have achieved incredible things in my life but my IQ isn’t anything special, actually a little below average. Im fortunate to have some particularly useful skills though which enabled me to thrive in both the private sector (purchasing management and systems analysis) and local government (bidding for large pots of national and European mobey), yet I also had huge deficits in social skills, had zero idea about how to staff manage and just didn’t get the subtexts so many NT people rely on to communicate. When I retired Id reached PO2, a very decent level in the local authority, I was a superb specialist but a rubbish staff manager.

    Another plus was having an exceptional memory coupled with analytical and logic skills, these enabled me solve problems from first principles all sorts of challenges in four dimensions. 

    But a further big negative is  ridiculous hyper sensitivity to both internal sensations (interoperception) as well as externally almost everything on bad days, light, sound, touch, smell, fabrics and so on. If out and about, say a busy retail park,  this can be very dangerous as it can result in a meltdown where my best kept to myself views are broadcast loudly. Thankfully my wife is great at spotting the signs and getting me out of dangerous situations safely and promptly 

    The term I would choose to define myself beyond the ASC diagnosis is Savant. For me there isn’t a correlation between IQ and achievement. In my retirement now Im reading voraciously, my collecting hobby focused on rare books and important writers. So add auto didact. 

    I agree with you about annoying people who quip “we are all a bit on the spectrum “, we aren’t as a population as a whole, and cliched as it is, it is true that “When youve met one autistic person youve met one autistic person”  However nor should we regard autism as some form of exceptional gift, ok there are positive aspects but huge negatives too. In my case the worst of these being four suicide attempts. 

    sorry about all the typos

    ALICE 

Reply

  • I was diagnosed in early 2023 with Autistic Spectrum Condition, even then the term Asbergers had been dropped by UK medical professionals. Im 68 now. I don’t understand all the levels you refer to, it feels like they put us into leagues like football for example, some people being Premier League others the amateur grass roots not-much-hopers, I think that is insulting and divisive as we all deserve the same respect and care regardless of our diagnosis, or not, despite differences in levels, in IQ, in the descriptive terms which are used  

    I have achieved incredible things in my life but my IQ isn’t anything special, actually a little below average. Im fortunate to have some particularly useful skills though which enabled me to thrive in both the private sector (purchasing management and systems analysis) and local government (bidding for large pots of national and European mobey), yet I also had huge deficits in social skills, had zero idea about how to staff manage and just didn’t get the subtexts so many NT people rely on to communicate. When I retired Id reached PO2, a very decent level in the local authority, I was a superb specialist but a rubbish staff manager.

    Another plus was having an exceptional memory coupled with analytical and logic skills, these enabled me solve problems from first principles all sorts of challenges in four dimensions. 

    But a further big negative is  ridiculous hyper sensitivity to both internal sensations (interoperception) as well as externally almost everything on bad days, light, sound, touch, smell, fabrics and so on. If out and about, say a busy retail park,  this can be very dangerous as it can result in a meltdown where my best kept to myself views are broadcast loudly. Thankfully my wife is great at spotting the signs and getting me out of dangerous situations safely and promptly 

    The term I would choose to define myself beyond the ASC diagnosis is Savant. For me there isn’t a correlation between IQ and achievement. In my retirement now Im reading voraciously, my collecting hobby focused on rare books and important writers. So add auto didact. 

    I agree with you about annoying people who quip “we are all a bit on the spectrum “, we aren’t as a population as a whole, and cliched as it is, it is true that “When youve met one autistic person youve met one autistic person”  However nor should we regard autism as some form of exceptional gift, ok there are positive aspects but huge negatives too. In my case the worst of these being four suicide attempts. 

    sorry about all the typos

    ALICE 

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