Eleven things adults with Asperger’s/Autism wish you knew

Someone I care dearly about shared this article with me this morning: 10 things every child with Autism wishes you knew. It’s a great article, with very good points; but there’s things that don’t quite so much pertain to adults or need to be re-phrased for adults, and I felt a need to write that version. This is my list, specific to people with “high functioning” autism, such as myself. This is just my feelings and thoughts at the moment, and a constant work in progress; it’s not a comprehensive list, and as there’s so many different ways Autism can manifest, this might not all be the case for everyone with Autism or Asperger’s.

11: I am not Autistic. I have Asperger’s/Autism, or I’m on the spectrum; what I am is a person.

My Autism is a part of me, and something I can’t just get rid of; but it isn’t who or what I am. It’s only one of many facets that helps to understand why I do things the way I do; it’s not the end-all and be-all of me. It’s not my passions or my talents or what makes me come alive. It’s not all of what I have to offer the world or what I can give back to the community around me. There’s so much more to me; learning how my Autism affects me is one thing, but thinking you know everything you need to about me just because you’ve learned that I have Autism is prejudiced and judgmental.

10: I am not “too smart/normal to have Autism” and I am not “mentally retarded” or “like Rainman”

Don’t disrespect me by declaring your blatant ignorance with one of these two sentiments. Autism is not Downs syndrome or brain retardation. On average, people with Autism have higher IQs than the average “normal” person. We can learn to mimic most body language and learn to cope in most casual social situations. This does not mean I don’t have Autism; all you are seeing is the first layer. You can’t “see” my Autism just by looking at me. It’s in my brain; of course you can’t see it, my skull isn’t transparent. I’m not “lazy” just because I can’t hold certain kinds of jobs or can’t deal well in certain kinds of school environments. I’m not “Rainman” and not everyone with Autism is; that’s a very specific form of autism, and a small sliver of the spectrum; it’s not anywhere near as common as people expect. My admitting that I have Autism is not a license to disregard everything I say as wrong or useless automatically, either. I’m not stupid, and I’m not broken.

9: My senses are out of sync and intensified; I will get overloaded sometimes.

I’m not uncaring, I’m not heartless, and I don’t simply have “anger management” issues. Autism affects each person with it differently. As children, some sights, sounds, smells, textures, and ways of being touched would affect me differently and more intensely than people might expect; I don’t grow out of that. My senses may become a bit more controlled as I get older, but what I feel with those senses doesn’t go away and I don’t just grow out of it. Some things will always just be too intense and too uncomfortable, even painful, for me.

I didn’t ask to be that way any more than a person born without an arm asked for that. Getting mad at me for not enjoying something you think I should, like hugs or certain fabrics, is no different than getting mad at that man with one arm for not being able to do things that require two hands without him needing a prosthetic. Food texture really is as important to me as taste, and there’s some things I just can’t eat because my body rejects the taste or tactile sensation so violently that I just cannot eat it.

8: Don’t overcomplicate things when telling me what you need or giving instructions

I’m not a child, so don’t talk down to me like you might to a child, but don’t give me too much at once either. I will try to let you know how much I can multitask and how much is too much; the simpler and clearer the instructions, the faster and more accurately I can get things done. Be clear and be blunt without being mean. It’s not that I can’t understand; it’s just that I need to be efficient. Break bigger, longer tasks into chunks and give me one chunk at a time; I might not have the ability to keep track of the passage of time as easily and I’m not able to cope with certain emotional stress as well as you might think I should; giving me too many complex tasks at once can cause me pressure to perform well, and that kind of stress can all too often cause meltdowns because it’s an emotion that overwhelms me.

7: My brain is like a computer, and body language is a foreign language; say what you mean, I take things literally.

I may seem like I’m able to understand subtle social nuances or signals, but I can’t always do that the way other people do. Body language and unspoken social guidelines that most people naturally learn are a foreign language to me. I might have learned to mimic some, but don’t expect me to know them all; tell me straight out what you want, and what you mean. My brain doesn’t have a master key that will always translate the things you say into what you really mean, and if your opinions, feelings, or boundaries change, I need you to tell me instead of expecting me to just know or just pick up on your subtle hints. Sometimes I need you to even explain why; I won’t automatically link cause to effect in my head. A lot of those patterns are not plainly visible, and because my brain takes things so literally, I need those subtleties pointed out and made obvious to me. It’s not a choice I made; it’s how my brain just processes information.

6: Listen to what I’m saying; not what you think I mean.

Emotions are hard for me to translate into words. Yes, thoughts aren’t the same things as emotions. Yet at the same time, my thoughts in my mind are not in words or written language; they are in images and sounds and raw, unfiltered emotions. So it’s usually hard for me to say what’s going on in my head and my heart, and I need your patience and I need you to not be judgmental when I share my thoughts and feelings. I may not always understand that how I feel and what I think can be different from what I do. I may not understand certain social guidelines or expectations you consider “normal.” I need help accepting that sometimes I don’t need to understand something, I just have to understand that going along with it sometimes makes it easier to deal with people, even if it seems pointless and illogical.

On the flip side, I may need help spotting social predators. I don’t just mean the violent kind. I don’t read body language easily, so I tend to trust by default, and so it’s sometimes easy for me to end up trusting the wrong people and getting hurt, either physically or emotionally. I can also stubborn and loyal, so be patient with me; sometimes it takes me learning things the hard way. Don’t gloat or rub it in my face when I do; help me to keep in mind that not everyone is like that, and I jsut need to be cautious.

5: I learn kinesthetically more than any other way

Teach me by showing me how it’s done, then guiding me as I do it myself. Do this more than once so it ingrains into me. Just giving me a lecture of instructions, verbal or written, does not teach me. Handing me a book and telling me to read it isn’t teaching me. Having me sit and watch a video isn’t teaching me. You need to show me, then be there to guide me as I do it myself. This is why a lot of college and university courses are hard for me without a 1-on-1 tutor, no matter how smart I am. It’s not me being “difficult” or “lazy.” This is just how my brain functions.

Changing the environment I learn new skills in means everything I learned is changed and I need to learn it again. When I learn something, my brain  doesn’t just learn the lessons themselves; they learn how, when, and where they’re done. My brain does not always have the ability to assume that the environment around me which the lesson is taking place in isn’t part of that lesson; be patient with me when the environment changes and I need time to readjust those lessons to the new environment, or if I need to be shown again in the new environment.

4: Encourage my strengths and talents; don’t accentuate my challenges or failures

I need constructive feedback, and often will need validation more than people expect. As a kid, I had a lot of rejection and judgments; that’s not something I can just “get over,” I need to learn that I’m not like that. My brain does not process or understand change the way other people’s do; I see change when it’s pointed out to me, and sometimes it’s hard for me to adjust. That includes change in myself, even small change like realizing I’ve gotten better at something.

Focusing on what I’ve done wrong does not help me learn to be better; focus on how I can be better, but constructively; Show me simply and quickly where I messed up, then work with me on how to be better. I will move toward where I focus; focusing on the mistake itself merely keeps me moving in that same direction and repeating the mistake.

3: I am often awkward. Get over it, but don’t put up with absolutely everything.

We all learn social skills and reading body language through our understanding of emotions, both ours and other peoples. But my emotions are intense, overpowering, and confusing; as a kid, this made learning body language and social nuances like boundaries difficult, and that’s no less true as an adult. This means that I might slip up and say things I think or feel which might be inappropriate in certain social contexts, or I might seem selfish and disassociated in certain situations. I might not always find some jokes funny, or I might laugh at things that might be inappropriate to be laughing at. Be patient with me.

That said, this isn’t a license for me to act like a jerk. Not understanding boundaries does not mean I’m free to ignore them; I’m not king of the world. Be patient, but be clear in where your boundaries are, and what the consequences of my disrespecting them will be. Hold me accountable. I may have meltdowns; be patient with me, but I am an adult and need to remember that my emotions, including my meltdowns, are symptoms I need to deal with; they are not your fault or your responsibility to fix or control. Even if you’ve done something that hurts me; that may warrant my feeling hurt and angry, but that’s not an excuse for me to abuse you. My Autism is also not an excuse for you to disregard when I am hurt or upset. Work with me, find the middle ground.

Also, don’t assume that I’m completely socially inept; I’ve learned a lot of skills for coping in social situations. Take the time to learn where I’m strong and where my understanding and social skills need help. Don’t assume I don’t know any, and don’t expect me to just learn these; social skills and body language are a foreign language to me, it’s just like how a person can learn later in life to speak another language but will never have the same inflection as a native speaker of that language or someone who learned from childhood. Just like that person will always have that hint of an accent which reveals it’s not their native language, I’ll always seem just slightly odd no matter how skilled at mimicking body language and social nuance I become.

Sometimes I need people to help guide me into being social; I might need friends who go out of their way to include me in activities or to take me out. Learn what my interests are, learn where my hard limits are, and help pull me gently with love, patience, and positive reinforcements out of my shell. It can sometimes take a while, but I really am worth it. I can be a dedicated and loving friend when in the right kind of social environment.

2: Learn what triggers my meltdowns and understand what a meltdown is

A meltdown isn’t simply me having a tantrum like a toddler. I’m in serious distress and having either a sensory or emotional overload – too much informational input into my brain in too short a time. I can have them on bad days, and also on good days; even too much happiness or good things can become intensely overwhelming and result in a meltdown. I hate having them. I’m embarrassed when people see me having them. At the same time, it really is rude for me to expect anyone and everyone around me to just let me have one anywhere I happen to be.

There are often things that will trigger meltdowns more than others; being crowded in a large space with too many people, too many conflicting noises, overwhelming smells, it’s different for each person with Autism. Don’t assume immediately you’ll know what my triggers are just because you might know someone else with Autism; take the time to learn what mine are specifically.

1: Love me unconditionally and accept me as I am; not as you think I should be

Autism is something that permeates every aspect of my life; but it is not who I am. It doesn’t define me, any more than you’re defined by your height or how big your feet are. Your height may decide whether you’ll be an all-star basketball player, but it doesn’t determine your potential as a person overall. Your foot size may determine things like the way you step or what kinds of shoes you can wear, but it doesn’t determine what career path you’re going to take or what pastimes you should have. My autism isn’t much different. It makes me different, unique, even odd; but I’m still human. I still have fears and needs and dreams. I still deserve respect for the person I am, not assumptions or judgement because I have Autism.

I can’t do just any job at all; I need the right job. I need a work environment that suits my specific needs and limitations, and that means understanding what my unique needs and challenges are because no two people with Autism are exactly the same. Don’t patronize me by telling me to “just get a job” or judge me for not being able to hold jobs for very long; without the right patience and encouragement from family and friends, it can sometimes be hard for me to figure out what my talents and strengths even are, let alone know how to develop those into skills and find work that uses those skills.

I have problems and challenges, but I have talents and skills too. I’m no less human and deserve no less respect than anyone else. There’s amazing things I can do with the right environment and the right encouragement, and I can be an amazing friend or even lover/spouse. See past my limitations to the person underneath, take the time to learn what makes me a unique person and what makes me come alive; for what makes me come alive is who I really am.

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You don’t understand; I *am* doing it for myself

I fight depression and battle self-doubt (or self-loathing, whichever term is more intense) way more often and way harder than I think anyone realizes. I want to be successful more than anyone knows, and I struggle with figuring out how I can be. A lot of times, people hear me talk about the struggle and what help I wish I could ask other people for or help people have been, and I keep hearing the same phrase “You need to do it for you.” Almost any time anyone ever says that to me, that’s not at all what they mean, though. What they really mean is, “you have to do it alone without my help.”

The problem with that is, that doesn’t work. Not for anyone. Not one single successful person in the world has ever become successful alone, and they haven’t become successful by literally not caring what others think of them. They all had help and emotional supports. They all have lists of people they thank in their award speeches. They all have mentors that never gave up on them and stuck by them, supporting them, pushing them back onto their feet when they fell. No one becomes successful alone.

Being alone is part of my greatest fear, and part of the way I conceptualize Hell. I honestly do believe that past this huge weight and huge bock of depression and low self-worth, I have the same potential as anyone for amazing things and ability to change the world for the better. But I am nowhere near strong enough to push past this block by myself. I need help. And no one wants to help me, they all keep saying “you need to do it for yourself” and meaning “you gotta do it alone.”

Yes, there’s goals I have that involve my mom. I want to get a small truck for myself, and some of my requirements for what I’m looking for are that it can’t be too low because it’s too difficult for her to get in and out of low vehicles without a heck of a lot of pain. That’s a goal that involves her as the measurement; but the goal is for me. I personally don’t like getting in and out of low vehicles, either; but more to the point, I want to be able to help her. That’s a goal for me. I want to be charitable, I want to help others. Not simply because they need help; it’s not that I feel obligated. I want to do it. For me. Because I like to.

Too many people mistake my goals that use other people in particular and their circumstances as the measurement of the qualities I want to have and want to cultivate. They think I’m doing it for those people. That’s jsut plain wrong. I’m doing it for me. Because I want to be that kind of person who’s capable of helping people in those kinds of situations.

And too many people push me away when I need help breaking through my self-loathing and depression and anger. They don’t get that I need help breaking through it. I need those reminders that I am worth it and I am capable. I need friends who can and will hammer through that depression and push me back to my feet when I fall into that pit, whether it’s by getting stern and telling me how worthwhile I really am, or just being there quietly and cuddling me until the moments of depression pass. I need friends who will have faith in me when I’ve lost my grip on my faith in myself.

For all I try to pretend I am, I’m really not Superman. I have some screwed up expectations of myself that I’ve not been able to shake yet. For years, when most people hear that I’m”disabled” but am considered to be “high functioning,” they tend to treat me in one of two ways: 1) act like it must mean I’m high functioning when compared to most average people like themselves then wonder why I have “problems” or can’t jsut do the same things everyone else does such as hold whatever job I can get indefinitely (the “you’re too smart to be disabled” mentality), or 2) they seem to ignore the “high functioning” and focus on the “disabled” then treat me like I’m broken or useless or to be pitied, as if I’m mentally deficient and low IQ.

Because of this, I’ve learned that in order for me to be accepted as “good enough,” I have to counteract the drop in people’s opinions of my worth by being better than everyone else so that their views of me balances out to “average.” But the truth is that I can’t maintain that; I’m not superman, and I’m not “average.” So I fail. A lot. And people abandon me; sometimes just in little bits or emotionally, pushing me away and becoming more “casual acquaintances” than “good friends,” sometimes by just disappearing from my life and no longer replying to me when I try to stay in touch. Which makes that big block of depression weighing me down even bigger. And it’s been getting bigger, and bigger, and bigger for years.

It’s gotten so big now that there’s no way I can just push it aside without help. But now it seems like people abandon me because of the block itself, because they think it’s too much to touch, and as if it’s my own fault. Maybe it is my fault; maybe I should not have tried so hard to be “good enough” by fighting to be better. But I found that just being myself made me even more abandoned and alone, and as I said earlier – no one person in the world ever became successful alone. And what I need isn’t as hard as people think; I need validation, affection, and sometimes I need people to spend time with me, talk to me, and not let me focus on the depression itself; does it really take that much to push me to talk about things I enjoy? No, it doesn’t; anyone who knows me knows that when you get me started on one of my passions, it’s hard to shut me up. I need to feel like I want to be listened to and people want me around. It’s really that simple.

am doing it for myself. But I need to do it with help. I’m not Superman.