Hurt by my severity level

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I am reviewing my original Autism diagnosis which was done in 2014 because I am writing something that requires me to review it. I noticed something today that I had never understood before and it explains a lot. It's my results from my executive functioning tests. The executive functioning tests were divided up into several tests to measure different aspects of executive functioning. One section, and ONLY one section, the section on being able to organize, I scored within expected parameters which meant that I do relatively well with that area, and it is not clinically significant, meaning, I am not too impaired in that area. On every other part of the executive functioning section, meaning in ALL other areas associated with executive functioning that they tested, I scored above the 99th percentile. I think, as far as I remember, that there were over 1800 Autistic people tested and ranked in order to create the comparison group to which each patient will be compared when doing this particular set of diagnostic testing. I could be wrong with that exact figure, but I think it's close to that. So, my scoring in the 99th percentile means that I scored more severely affected in these areas than 99% of the Autistic comparison group. This is HUGE in understanding the troubles that I had in school and in my inability to ever be able to hold a job and to make substantial gain at any job I have ever had.

In the sensory testing they saw that my brain can receive stimuli and focus on it better than 87% of the test group but my brain's ability to process that stimuli was only as good as 40% of the test group. This massive discrepancy is why I struggle so intensely and so severely with sensory overload, especially certain kinds of sounds. Sensory overload can make me go into sensory overload shock, pass out, have an episode of cataplexy or catatonia and have massive screaming meltdowns.

Other areas that were tested showed me to be more severe in restrictive and repetitive behaviors than 75% of the Autistic test group, more severe than 75% of the Autistic test group in maladaptive speech, more severe than 84% of the Autistic test group in emotional responses, and a whopping number in cognitive style showing me to be more severely affected than 95% of the Autistic test group.

But here is my problem. In one area, the area which tests social interaction, I tested as being more severe than 63% of the Autistic test group, so just a little over half. That is not considered clinically significant. But in the last category, the category that tested social interaction, I only scored more severe than 25% of the Autistic test group. That is also not considered clinically significant.

So, what is the problem with this? The problem is that even though I scored as significantly severe in all tested areas except for two and except for one subset of executive functioning, which puts me at a clinical level of Autism level three, I am not able to get any help or resources that I need to help me to survive because I am not considered Autistic enough. I can live independently but being able to live independently does not mean that you can survive without help. There are many things that I need that I have no access to because of my severity levels in all of these areas. Things like being able to get services for health care or services to help me when I am nonfunctional or the ability to make a phone call when a company's phone hold music is too overwhelming or the ability to go into a grocery store and shop without the risk of collapsing or the ability to get a mammogram or go to the emergency room or something like that because the waiting area is too overwhelming or the ability to fill out certain forms for welfare and government services because they fry my brain or the ability to have a conversation without risk of having a significant meltdown or social overwhelm collapse; I can't get help with anything at all like this because I am analytically intelligent and I can drive a car. And many people will argue with me about being Autistic at all and I have even had some people tell me I don't have the right to call myself Autistic.

I am just ranting and venting right now, nothing more. But it is very important for the general populus to understand that severity in Autism does not only look one way. Some of the things that I am severe in can literally end my life if I am not careful. We know and respect and honor the fact that disabled people who require 24 hour care will most likely die if they don't have that care. We all support that and we all honor it. But it is also important for society to note that being a severe Autistic can also come in a form that is not readily visible and that it does not have to mean that someone needs 24 hour care for physical needs. Severity can take many forms and we must start to acknowledge that so that resources can be created to meet the needs of everyone.

I think I may have shared some of these with you, skibum.
It's really concerning when people don't take our needs seriously and there are few resources available.

I even suffered the indignity of having another autistic woman tell me I wasn't "vulnerable".
She said I didn't need special help and shouldn't use any of this as an excuse in an abusive situation.
She actively denied me help and told me not to ask anyone else for help, either.

I have to wonder where incompetence ends, and liability begins, if something goes wrong for us?




Executive Function ^ Those represent extremely low scores.







Negative Affectivity doesn't mean I'm negative. ^ It means I have a flat affect.

Where did you get tested? I need to get tested. I got a college degree (don't ask me how I got it) but I can't hold a job and my social functioning is horrible. Sounds like the test was very comprehensive.

The Neuropsychology Department of my former University. ^

I'm not in USA though, so it may be different for you.

Check your local universities or ask your GP for a referral to a Neuropsych.

Here in the US, there is still a general attitude of Autism disappearing at 18. That's when services stop. Its far from reality.

I wasn't diagnosed until I paid out of pocket for testing, and its been like hunting unicorns to try and get any real, practical help. You do have a few options open to you with an official diagnosis. The biggest is being able to get workplace accommodations that can make working easier.

I've had to be something of an autodidact and learn both about my condition and what works for me in order to interact with the world...its not easy, but it can be done.

I've been working on learning how to self-regulate my emotions in therapy...its helping. I don't meltdown as often, and I am learning how to cope with sensory issues and sensory overload. Is it perfect? no. I am learning though.

I don't know.
This is one of the things I cannot relate.

But that's because I'm the type who still touches the hot stove even after being burned by it.
Or the type who got assessed with poor verbal IQ yet I can out perform my classmates.
Or the type who won't be surprised to be sick this whole time and not coping -- or healthy all along and I'm just being a 'spoiled brat'.

To a point that I wouldn't care if I were this super dysfunctional autistic or the reliable autistic.

I understand disappointment, I understand that things would've been easier if something was done about it.
If there is a way for me to stay as the reliable autistic... I would've been 'freer', with more interesting avenues to walk than toiling over little to no change and relying on 'luck'.

But mine stems from my whole life having poor accessibility around many things, not as an autistic who is in need yet won't receive.

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I have a question, it's a little bit off topic.
(My executive functioning is passable so I can't personally relate very well).
But my 21 year old aspie son is having huge issues with procrastination and not doing the things he is supposed to be doing. This ranges from washing up the dishes (says he will when asked but never does it - repeatedly for days at a time until I lose my temper and yell and he ends up crying), and not doing his assigned coursework (repeatedly, until he gets a fail and is thrown off the course). It's way beyond normal teenage procrastination, it's causing major headaches, like him not being able to get qualifications.
So I was wondering if this sounds like an AS executive function problem? Or something else?
Just hoping for the thoughts of those with EF issues.

That is quite severe Isabella, I think you mentioned your difficulties like not liking leaving the house and being mostly mute but 99th percentile is so high :0

Skibum- it's shocking that a LVL 3 can't get help.

I used to have difficulty in restaurants, just feeling overwhelmed,but it got better with exposure thankfully.

I had a burnout of sorts but it was just due to stress in general and not due to masking.
I now find it difficult to do anything constructive or intellectual, whereas I used to be able to do stuff like that all day.

You're averse to touching water too, (!) That is one of those invisible disabilities that needs support.