Rediagnosed

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I was originally diagnosed with ASD level 1 five years ago. Recently, I requested a re-evaluation in order to update my paperwork and get a more recent sense of my strengths and needs. I got the report back today, and they diagnosed me with ASD level 2. I'm not hugely surprised because I've read descriptions of people diagnosed as level 1, and the majority of them appeared to have their lives together far better than I do, however it did give me pause to think. I don't know if I've always been a level 2 and was just in better circumstances during my first eval, thus falsely inflating my executive functioning scores etc., or if I really was a level 1 back then, and have since regressed significantly.

Honestly I'm personally inclined to suspect the first idea as more plausible. During my first assessment, I was living at home with my parents and really didn't have to do a whole lot to take care of myself day to day, but now I'm on my own and struggling a lot with things my family used to do for me. Case in point, I've eaten one meal today, I've been wearing the same pair of socks for four or five days straight because I don't have any clean ones left, and my bedroom smells funky because the trash can is overflowing. You'd think these would be things a person with a college degree would have no problem taking care of, but I keep making plans to do them, and then getting distracted by other minutiae.

I know a few people here have been diagnosed, then moved up a level upon rediagnosis some time later, but has anyone ever dropped a level, either because you lost functioning skills or because your first evaluation didn't take circumstances that mitigated your difficulties into account? I'm still trying to process how I feel about all this.

I think you're right because it's the same thing people like me go through just shifted one level. When I was living at home or at college no one thought I was autistic because my parents/the school were taking care of a lot of things for me and I was functioning just fine. Once I got to grad school and had to do things like maintain my apartment, cook my own meals etc. I started having major problems.

So I think you're correct in that you were always level 2, just support made you seem like you were level 1. Just like many of us who are diagnosed late in life at level 1 seemed "not-autistic" when we had significant support.

In terms of functioning my experience as a mentally ill person is that there can be quite a difference between being far from or near to family support. I was living in a flat that was suitable to be on a "grimiest flats in the UK" programme.
As apart from one time I always went to the mental health centre for my depot injection they didn't cotton on to how things were.

As the block of flats I was living in was due to be demolished I moved to be near my step daughter in September 2017. She arranged for me to have help keeping the flat clean. She takes me shopping. She comes to appointments with me. She chivies me in a loving way over clothes, washing,washing hair etc . It is said in my care plan that the support is to enable me to continue living independently in my flat.

I asked my depot nurse about my functioning .She said it was medium-high/high-medium, but much lower when I was living at my previous place.

Can functioning change due to changing circumstances? I would say most definitely-yes.

My functionality has varied over the years and I do think the circumstances played a role.

I hope the new diagnosis is helpful for you.

It could just be that your first diagnosis made you more aware of your weaknesses, enabling you to better communicate the extent of your disability to the doctor during the second assessment. My assessment showed me significant weaknesses in areas I never even knew I struggled in - executive dysfunction, emotional intelligence, and others. During the actual assessment, though, I didn't realize that these were issues at all, and so I self-reported much lower levels of disability than I actually had in these areas. On the other hand, it could come down to the differing perspectives of your doctors. Different clinicians look at the levels in different ways. The doctor who assessed me considered me more impaired than my therapist does - even though both are exceptionally qualified and competent. The boundary between Levels 1 and 2 can be quite fuzzy in places.

I agree with your first hypothesis; that degree of functioning is highly dependent on context. When I was assessed, I still didn't really know what autism was; and it's a fairly guided, formalised process, unlike the chaos that is "real life". I answered the questions I was asked as truthfully as possible, but in essence, my (attempted) masking was so ingrained that I was still mostly projecting my "public" persona. I wasn't asked how often I change my socks, nor how many attempts it takes me to get up and make a cup of tea, and had no idea that I should mention such things. I had been informed many times that they were symptoms of mental illness, from which I had undoubtedly suffered over the years. So until I started talking to people about executive functioning issues and burning-out, I assumed that depressive self-neglect was all the explanation that I needed.

If my assessment had been scheduled for one of the days when I can't even leave my room, because even a polite "hello" from my landlady seems too much to bear, I'd have got no diagnosis at all, because I wouldn't have shown up!

I've never received a diagnosis but am strongly suspecting level 1.

I relate immensely to what some are describing here. My functionality plummeted when I went to college and didn't have support. My high school self would have just come across as socially clueless, naïve, and overly obsessed with music/my instrument and politics. It wasn't until college that you would have noticed my total lack of ability to do daily/weekly/monthly maintenance kinds of things. Someone said something about changing socks...yeah I have those kinds of problems immensely in many ways, and that issue resonated when I read it.

On a related tangent, I just did my laundry! I go for long periods without doing it, and it gives me a lot of anxiety (which makes me less likely to do it). So I'm feeling proud of myself for finally doing it. I don't know why it becomes so hard for me with little things like this. I'll wake up with a plan of action and somehow waste the day doing almost nothing. I end up constantly propelled by crisis.

I do become more functionable when my environment is better. Even still I have large problems, but if my environment is stressful my executive dysfunction gets critical and paralyzing.

For me a major one is brushing my teeth. Hence combined with dental phobia and teeth grinding my teeth are in a very bad state. It's because it doesn't come automatically to my mind to brush them.

Another one is taking oral meds. I regularly forget to take them be they psych or non psych meds.

I'm level 2 now as well, one of the reasons I don't think functioning labels are a good way to go is because the lines can get really fuzzy really quick and can and do change.

I wouldn't be surprised if I were to be diagnosed as a Level 2 these days. I think that life tends to be easier for children and teens and that's why the scores are different. Adults have more on their plates like bills and taxes and more social pressures.

This is why I don't want a diagnosis. I am afraid they will get me on a bad day and I will wind up being rated as lower functioning than I hoped. I would be afraid of getting an evaluator who says, "Hopeless case, dreams will never come true. You shouldn't be doing all the things you're doing. You're obviously not smart enough."

I hope I would get an evaluator who thinks that way. I had someone evaluate me who did tell me I shouldn't aspire to anything great. She didn't give me a plan of action to work on my needs.