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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...

  • Hi there, I was diagnosed with autism recently and although I wasn't given any more detail than that, I suspect it would be level 1 (previously known as Asperger's). I also have a high IQ and got into MENSA several years back and I do think this is what has masked my difficulties so far. I can usually work out what people's intensions are/ how I am meant to act so I don't 'appear autistic' to most people. Only my friends haven't been surprised by my diagnosis because I mask less around them and they are similar to me in a lot of ways. I was diagnosed previously with anxiety and depression (as many autistic people, especially women, do) and this seems to have been easier for others to understand than autism. 

  • Hi, welcome to the community. 

    It's frustrating to hear these comments "we are all on the spectrum" or "you don't look autistic". Many people here share this experience and it always feels invalidating. Usually people, who make these comments have no or very little idea about autism. And that it does not have a look.

    I'm also kind of concerned and curious,  if there is any way, that people accept the fact, that someone suspects being autistic. It's called "self diagnosis" which might be not right in various situations. I'm suspecting autism,  together with my therapist, it took me around two years of research,  periodically obsessive research,  also a lot of doubts. I joined this community and although I often feel guilty of claiming something that I don't know for sure, I stay here because this is the only place where I have sense of belonging. I'm waiting for my assessment,  so autumn this year I should have the answer. If I'm not autistic,  I wanna know what instead to finally have the decade of misdiagnosis and wrong treatment behind.

    Diagnosis is often inaccessible especially for adults. When it comes to me and adjustments- I skip sharing diagnosis or suspicion, I just explain with my own words, what are my difficulties and what I need to work. It works for me this way. My therapy helps me find words 

  • Hey SJ7, it’s good to hear from you again!

    I wasn’t superior on the IQ portion of the test, but I was rated above average. I also mask well enough that people are often surprised when I disclose to them. I try to be careful who I disclose to, because I am fairly afraid of encountering situations like:

    SJ7 said:
    the person I'm talking to cuts me off and says "Aren't we all?"

    Like I think I’ve said before, around here it’s a bit of a toss up whether the person you are talking to is going to be deeply understanding of your struggles or completely dismissive because they see Autism as only level 3 and caused by vaccines. I’ve been lucky to be able to suss out who is more likely to understand for the most part.

    I’m especially lucky to be surrounded by coworkers that get it. We went to a social event as a company last Friday and it was LOUD. Very loud in a fairly small space. My coworkers were very aware of how I was feeling, even checking on me well before I was starting to feel overwhelmed. They didn’t fight me to stay when I asked to leave a little early, as well.

    It sounds to me like you could use a little community to back you up as well. I’d say you should get some people on your team so that when things get hard and/or you question yourself again they can back you up and keep you grounded.