Autism Level 1: “Requiring support” – What Support?

Doctors and medical professionals are trying to nail down and better categorize Autism. The latest grouping places the entire spectrum into three buckets, depending on the level of support required for the person to function normally in society.

I fall in to the Autism Level 1: “Requiring support” category.

Level 1: “Requiring support”

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Making Sense of the Three Levels of Autism – verywell

So they give me this label and throw me back out into the world, ironically without support. Now what? I am supposed to have this key that allows me to ask for things. My doctor tells me I have protected rights.

At first I am excited, finally I might be able to be more comfortable in my surroundings. I can ask for things and there is a reason besides me being difficult or high maintenance. Finally validated, yes those burning lights DO cause your migraines and avoiding them would be good for you.

What next? Asking for supports turned out to be more difficult than I thought it would be.

This category does not do my life experiences justice. On many levels I can surpass my NT peers but on a social level I often fail. When I put on my masks I can play these amazing characters who are social and confident – but being this person, who they want me to be, kills me. I can do her I can “be normal” but summoning the strength leaves me empty and ill.

Holding up this mask is a necessary evil from time to time, she gets me through my work days and the hard times. She is a character, someone I wish I could be – someone I am forced to be when backed into a corner.

Because of my mask I have peers in both groups, but the NT’s have never felt like peers. Watching, and observing them, trying to memorize their pasterns and mannerisms. Hoping to decode their intentions and feelings. Even reading their faces is difficult for me.

People don’t want to give me support because “I CAN be normal.” I am capable of acting like there is “nothing wrong with me”. (Quotes representing their words NOT mine.)

I can hide my pain, panic, and discomfort, manage to hold myself together just long enough to flee from the public eye. I always do – but I still have sensory issues and meltdowns like many of my ASD peers.

I need regularity and a predictable schedule, I need natural light and calm conditions or my overactive amygdala goes crazy and I get anxiety related illnesses. In my mind I am strong enough to do anything but my body and nerves won’t let me push myself as hard as I used to.

As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow. My Autism becomes more and more invisible, despite the disruptive symptoms, growing more intense.

I need help and supports more than ever but asking for them never goes well. Most people don’t believe I’m Autistic, and those who do say “but it’s  not that bad, you are normal.”

Employers don’t understand, they say things like “You only have to deal with florescent lighting three out of the five days a week you work – if you were here more maybe we could give you a window.” “You can’t wear earplugs today, we need you to answer the phones because nobody else is available.” For a job that was originally going to be FULLY REMOTE.

It always comes out like I am being unreasonable, picky, or difficult. At least that is how the opposition to my requests tend to spin things.

My accommodations are simple, let me type vs hand write, don’t give me spoken directions, let me sit in a quiet space (or wear earplugs) with natural light. Don’t ask me to stay late at the last minute if you can avoid it – if you know I may need to stay late tell me in advance. Most importantly please don’t make me go outside when it is cold. I have EXTREME cold sensitivity.

These are the accommodations that I’ve requested from my job – these are the supports that I would like to have because I feel like they are reasonable accommodations, and should be protected under the ADA.

The only support I get is a laptop – because it belongs to me and is essential to do my job (everyone at my work gets this so it’s not really a support). I can take notes on it, keep track of my schedule with it.

It is AMAZING that I get to work remote a couple of days a week. I am happy to have these things but the other items are important to me too and I haven’t been able to get any of them – not even the last one which always leads to meltdown.

Maybe I don’t complain enough. Nobody sees me on my worst days, when I am really struggling because I am PHYSICALLY ill from the stress of the environment and can not leave my house.

I “require supports” but it doesn’t mean I can get them. After all I’m (not always by choice) Anonymously Autistic.

Some days I feel like I am falling apart – if I stay in this world too long it may end me. Nobody can take care of me, I have to keep working.

#ActuallyAutistic #SheCantBeAutistic #InvisibleAutism #AnonymouslyAutistic

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38 thoughts on “Autism Level 1: “Requiring support” – What Support?”

  1. this is very enlightening
    It seems necessary to have some sort of advocacy to put accommodations in place at work, and have this in ones contract. I don’t think labels are necessary to do this. for example ” religious accomodations” that allow one to leave work early on Friday or wear a headscarf don’t name the religion.

    Liked by 2 people

    1. The thing is I am supposed to legally be able to “demand” these things under the ADA – however if you demand something of your boss you get fired. . . its hard because employers don’t think you need things when they know you are a capable employee.

      Liked by 3 people

  2. I so appreciate reading this! You’ve nailed it when you say that people think, because you CAN do [x, y, z] then, well, you CAN. Not realizing the toll it takes. There should be some sort of training that all employers should need to take about invisible differences. I would guess that most truly don’t have a clue. 😦

    Liked by 2 people

  3. This is how I feel so often, dealing with people/employers who make me feel like I’m asking for preferential treatment. Sometimes talking to someone who is ignorant of autism can make me feel like an idiot. What can I say, ignorance is bliss. Be strong and take it easy on yourself!

    Liked by 1 person

  4. My heart hurts for you in reading this. I had similar struggles when I had traditional jobs but without knowing why. I always thought I was just defective. So, I masked. And, by the end of the day, I was so drained I could barely function. Yet, I could never explain why. Actually left a lot of jobs when I was younger for fear I could not sustain. It took the necessity of single motherhood to keep me at one position for a significant amount of time-though it was honestly agony most days. Perhaps, having been able to identify autism then might’ve helped on some levels, but, knowing my boss as I did, I suspect there’d have been little understanding. I admit I like being home, though writing is definitely not steady income, particularly with my distaste for the marketing expected these days. 🙂 The older I get, the more pronounced some struggles seem to become and, therefore, the more I fear ever having to return to the traditional working world. It’s like my energy reserves I had to bank on all those years before have all but dried up. I am truly sorry for all you are dealing with. Thank you for putting your voice out here.

    Liked by 1 person

  5. Yes, it sounds like people dismiss your needs a lot. We can only hope that we can change people’s attitudes over time.
    Not to dismiss your pain, but some of your description made me smile because the public can be so naive. I’m an introvert. Very introverted, which means I fit a lot of what you first described. Yesterday I stopped at a store and talked to a very extraverted salesman. I was drained when I left. Extraverts drain my energy. Another example of how we bundle our various foibles and difficult edges.

    Liked by 2 people

  6. Thanks so much for sharing. The paragraph: “As I get older my senses and sensitivities seem to be getting stronger, and my coping mechanisms and confidence grow….” confirmed something I have been wondering about. Some of my symptoms have intensified. I have a hard time now getting through a paragraph, let alone a page, without being distracted. I used to watch movies but I seldom anymore because I can’t sit through them. Sitting still is becoming harder for me to do. But I have more coping mechanisms since learning I was autistic months ago such as exercise and hobbies. I appreciate so much your sharing. It makes me feel less alone.

    Liked by 1 person

  7. Well, let’s see.

    I CAN lift 250 pounds – doesn’t mean I can carry it or that I should be doing it all day. And so far, if I’ve needed to I get a cart to help me do so.

    I CAN relate to 5-year-olds, and do it well, for 45 minutes – but I don’t think anyone wants me to be a kindergarten teacher. I recognize this and, instead of teaching, I am an educator at a museum.

    Just because someone CAN do something doesn’t mean they can do it ALL THE TIME. You’ve explained that quite well and in a personal way anyone can (or should, if they have any empathy) understand.

    I know why people easily understand physical disabilities but have such difficulty understanding mental disabilities, but I don’t “get it”. How are people so tied up in how they do things that they don’t understand that others aren’t as capable as they are? It’s sad, and demonstrates a lack of empathy. Granted empathy is hard, but it’s far from impossible.

    On a couple of occasions I’ve responded to “Why don’t you just…” as a way of “fixing” me with, “Why don’t you just understand that I can’t do it?” But then I’m somehow the bad guy. From your post it’s clear you’ve experienced that a lot too. It’s sad, really; accommodation to people with different needs isn’t difficult, so why doesn’t it happen?

    Thanks for sharing your story. Those of us who have, or who know people who have, these types of issues understand – the hard part is getting people who refuse to understand to accommodate it. We’re not asking for special treatment, only understanding.

    Liked by 3 people

  8. When I read this sentence….I am capable of acting like there is “nothing wrong with me”…I am reminded of just how draining this can be. It expends a huge amount of energy that could better be used in other ways towards productivity. (That is what employers want, right? If they would only give a little, they would get back so much more!)

    Liked by 3 people

  9. I agree that the “requires support” thing is crazy, given how little is done even if we manage to get a diagnosis. I also have always felt that I have to take care of myself.

    One additional complication of this: I spent decades learning how to “act normal”, as an autistic female. I just recently read that not only do we have trouble “reading” some more subtle nonverbals of NTs, but they often cannot “read” us well! I would be verbally telling some people, over the years, of problems I had, abuse stuff, and they’d just look at me; then when another (NT?) would say a similar thing and apparently be appropriately upset facially or whatever it is, that person would get loads of support, offers, etc.

    This happened in several support groups to me (for trauma stuff) and left me feeling way more alone each time. One therapist group leader told me I intellectualize. But I was really feeling stuff! I knew it, but the way I talked about it didn’t get me support from her or similar people. It’s well documented that interpersonal support helps humans recover from many issues. Yet we are just told that maybe we’re more prone to anxiety or ptsd or depression or whatever, without research being done into how to emotionally support us given our differences in interpersonal communication stuff.

    So, it felt for decades (I’m not young, just got diagnosed) like I didn’t get the supports that (NT?) people got in numerous ways, from what I could tell. So the “requires supports” thing really upsets me.

    This is improving now, with a diagnosis, thank goodness. Not having to feel that I have to make eye contact is a huge relief, writing stuff beforehand because spoken stuff takes too much brainpower, and there are other things. Things that it feels like all those researchers should have been able to figure out!!! How many autistic lives have been lost due to inability of NT researchers to take a different perspective? (Well, this is apparently a human constant across all history, but NTs should admit it about themselves too.) (end of rant)

    Liked by 1 person

  10. Oh my goodness, I want to offer you all the things a BIG HUG represents without touching you! I want to go into Mama Bear mode and get all your supports for you. You do so much good with this blog and just like so many others, it seems like unless you’re a complete jerk you get no help. I’m angry & frustrated for you. I hope it helps you a little to know that all of us readers have your​ back😘💗

    Liked by 2 people

  11. I also find the DSM 5 categories are too vague, and too restrictive. I originally had an Aspergers diagnosis. While Aspergers was a category of autism, I found social groups that worked for me. Once DSM 5 came in, I fell under the Autism 1 category. Once that happened, the group broadened to include the wide range of Autism 1. The problem with only 3 categories is that the needs are widely different within the group. The group was no longer suitable for my needs.

    Liked by 1 person

  12. What kind of support can adults by the way get under ADA? Other than the “reasonable accommodations” for work.
    I’ll still trying to figure if it’ll be worth going thru the official hassles of finding some psych that is able and willing to diagnose adults aspies (especially since adult ethnic/immigrant aspies with femaleness don’t exhibit the textbook ASD behavior of monolingual white upper middle class boys under 10 and usually aren’t as disgusting as Sheldon from Big Bang Theory). Should I even bother?
    If I were to work again (paid), noise canceling headphones, software that allows me to not rely on eyes, apparently a special permission to wear my prescription shades etc (been somewhere where religious headwear was allowed, but dark shades not. WTF? Guess which one has a medical reason. My bloody eyeballs hurt, so when the dark shades don’t cut it, blackout bands or mindfold shade time).
    I think the biggest reason for getting official for me would be making it easier to get a service dog some day. :-/

    Liked by 1 person

      1. i did some online tests and saved those and showed them to my therapist. who agreed that i do have quite a few aspie traits etc. i think i posted the screenshots in twitter like 1-2 years ago too.
        i do write quite a bit and the blog sort of helps too; bei able to write in as much detail as i want (and mo pictures).
        lots of MH professionals seem only interested in giving people drugs. the other issue is of course that when a person has been diagnosed with congenital femaleness and with subsequent shit misdiagnoses, first thereʻs no trust, second doctors always fʻn interrupt. if i do find a good one, iʻll gladly show all iʻll have written by then, either as “hereʻs a screenshot on my ipad, you can read it but canʻt have a copy” or if particularly not entertained, iʻll make voiceover read everything loud and clear (and no, they still canʻt have a copy). still… hmm. dealing with idiot humans, paying quite a bit for something i alreafy know, so just to maybe be able to bundle it for a puppy? hmm

        Liked by 1 person

  13. Sadly, this is why your blog is really important (still), I’m glad you’re sharing your thoughts, you not getting the support you need should be unacceptable. As well as how hard it is for you to ask for the support you need.

    My boss knows I’m autistic, but he doesn’t know what it means at all. Today I got a well-meaning “if your back hurts you can take a break in the breakroom or do computer research for the rest of the day”. ….what???.
    I also went through some papers from the Unemployment Office which said I have no communication issues and another paper where disability box wasn’t ticked. The reason I work through the unemployment office in the first place is because I’m Autistic and had to present my diagnosis papers to even access those services. I wonder what they think autism is. o___0

    Liked by 1 person

  14. My wife has very similar support needs and asked for reasonable adjustments to be put into place by her employer. Unfortunately these took a great deal of time to establish as our internal policies fall well short of legal requirements sometimes. Eventually these things were put in place but then they needed to be fought for constantly. Eventually this, and some other related issues, led to her needing to walk away. It wasn’t an easy decision and financially were struggling but after everything was taken into account, her walking away was a complete no brainer. I so hope things improve for you anonymous and that you meet NT bosses that don’t try to inflict their NT solutions into you.
    Keep writing, keep spreading the word and just keep swimming…just keep swimming. Ned

    Liked by 2 people

  15. It’s amazing how often I read things on this blog that seem to be a description of me, this is another occasion when it’s true.
    It’s ridiculous that when you have a diagnosis of a recognised condition, whether it is visible or not, you cannot get either the help or the support that would make things easier for you. What makes it even more ridiculous to me is that employers can’t seem to realise that a bit of accomodation would make you, and me, and others like us, more productive in the workplace, which would benefit them in the long-term.

    Liked by 1 person

  16. I understand completely! I thought of starting a support group but fear I will get overwhelmed & let ppl down. Life’s countless unpredictable switch ups & over (or under)stimulation make commitments precursors for failures. I fail enough. I sure don’t want to risk letting my own tribe down. Still, I am about to purchase a little program “Deep in Defense Mode” from Asperger Experts and keep trying & trying again. People are important to me. I want & NEED to be at least a little more available. I have hope❤️

    Liked by 1 person

  17. I can understand how you feel. Some bosses can be demanding. I have been through that phase. The most important thing is to be careful of people. I don’t fully understand people’s intentions as well.

    Liked by 1 person

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