People don't believe me when I tell them I'm Autistic. Thoughts?

[Iamnotarabot]

I have an opposite, but related problem. Some of my kids refuse to believe that I am autistic...!

My middle daughter [27] is likely an Aspie, but she'll refuse to consider that even though she has had complete strangers ask her if she was.

Well in any case the most important is to have a life style adapted to your need so if she manages to cope that's what matter the most.

 

[Zara19]

People don't believe you because they don't understand what autistic means. Especially for women. Like it or not, we are all now in the business of educating the world.

You sound like you're having a lot of problems. Getting a diagnosis can be helpful in getting the attention you need and deserve from the people you are trying to communicate with and it might also lead you to some other support that you need. From your avatar I assume that you're a woman. Finding someone who knows how to evaluate women can be a challenge but I think worthwhile.

Instead of explaining your needs in an off the cuff manner, maybe take some time to put together information that you can present to people. Both in writing and short oral explanations. You might find that you need different versions for different audiences. That's Ok. Do one at a time. If you only get one done, you're that much ahead of the game.

Maybe something in writing for doctors, close family and friends who need more information. Something sort and spoken for other situations. Maybe just "It is really helpful if I know the details of where we're going ahead of time."

You sound very frustrated. If they see you as coming across as irritated or angry, it will be harder for them to really listen. Even if that's not what you are intending to convey. Not fair, but I try to remember that the other person has their own set of difficulties and maybe aren't as aware of theirs as I am of mine. "try". I don't always manage this and neither will you.

Try explaining your needs at a neutral time - before you're in the middle of a difficult situation. You won't be able to do this all the time or with all people but every little bit will help.

And some people just won't get it no matter how you approach them.

Thanks for the advice. I was diagnosed with Autism when I was 14 (I am 19 now) But the diagnosis has only hindered me. Upon bringing other unrelated issues to doctors/ psychologists they will point to Autism as the cause and ignore me. Its ridiculous, people in the medical community take away my autonomy as a result of my diagnosis. While most friends and family find even the thought of me being Autistic utterly ridiculous.

 

[Pats]

Thanks for the advice. I was diagnosed with Autism when I was 14 (I am 19 now) But the diagnosis has only hindered me. Upon bringing other unrelated issues to doctors/ psychologists they will point to Autism as the cause and ignore me. Its ridiculous, people in the medical community take away my autonomy as a result of my diagnosis. While most friends and family find even the thought of me being Autistic utterly ridiculous.

Although I was always the one responsible to pay bills, it was advised that I have a guardian to handle my finances. I managed to get that removed. 60 year - am I suddenly not able to handle anything on my own???

 

[LovingMom]

I don't bother telling people anymore. Many days I don't believe I'm autistic myself. I wonder if its a personality or anxiety thing. I wrote some stuff about how I relate to people. Feedback would be appreciated.

People are hard, I need to invest an enormous amount of energy into understanding basic things. I use scripts to help me. My scripts are incredibly complex. Like instruction manuals or algorithms built from the ground up to deal with very specific things like, gestures, tones of voice, phrases.


I highly recommend you watch this video What You Need to Know About Neurodiversity on Neuro Diversity.

I think that we are entering a brand new age where we stop referring to some people as "disabled" and others as "normal." Everyone is on a spectrum of some sort of understanding, capacity, orientation to the world and to others.

Did you know that ASD used to be referred to in men as "man disease?" Seriously, I'm not kidding. This is just what makes it so difficult for people to get people with ASD. In lots of ways, you and others with ASD appear to be like everyone else, to the extent we perceive we understand what "like everyone else" really means.

And, as you've so well named, you have scripts and other coping strategies and skills that you have developed to help you get by in an over-stimulating sensory and confusing world.

The reason I bring up "man disease" as a reference is to point out that there are millions and millions of people in the world who have the challenge of not yet having the skill, capacity or familiarity with navigating their emotional world, much less articulating an understandable description.

There are also millions and millions of people on this planet who are completely confused about social-emotional intelligence, those basic skills you're talking about--social cues, context, etc... Most of them would not necessarily be described as having ASD, and yet, the behaviors and confusion that they experience are quite similar, often identical.

Soooo...when people say to you: "oh, I get it" they are referring to the run of the mill confusion people have with social-emotional situations.

You should know that most of the people who appear to get these situations, are mostly faking it and also using scripts: "hi, how are you?" they're not really interested and/or attuned to your answer, they're just doing what they have been taught, using a script. Only, with them, it probably doesn't cause the level of anxiety you and others with ASD are experiencing.

Have you read the research that is fairly new about how people with ASD, previously thought to be incapable of empathy and deep emotional understanding, actually are experiencing empathy and their own emotions much more deeply than the rest of the world and this is a primary cause for the anxiety and depression.

None of us have adequately learned how to navigate our emotional lives. Most people are acting most of the time, copying what's socially acceptable and carrying on--and they're not necessarily living satisfying lives...they're doing what's "socially acceptable," and that might include becoming an alcoholic, addicted to opiodes, work-a-holic, etc...

Do you see what I am getting at? You are no less "normal" than anyone else, you have though been identified as someone who cannot tolerate the "status quo." And, that's actually a good thing. The problem is, you haven't been introduced to the tools on how to navigate life from this place--with what may feel like a hyper-sensitivity to yourself and others around you.

Make sense?

It sounds to me like you have the making of an awesome and inspiring TedTalk from what you wrote!

I have a teenage daughter with ASD and it's been hard for me as her mother to really get that she has ASD, and her father, who also has it, but denies it, really struggles with it acknowledging that she has it...and so continues to set unrealistic and unfair expectations of her as a result, which of course leaves her feeling ashamed of herself and her self-esteem plummets. And, like many dads, not just ones with ASD, doesn't pick up on what I'm going to call the "social-emotional cues," of what she's needing in the moment.

I'm a highly skilled and professionally trained coach in this area, and I often miss the cues! It's a full time job. So, for me, my extra work to get along on this planet and to get along with my daughter, is a regular practice of forgiveness and self-compassion that I'm not always going to get it right...just like the rest of the world, those with ASD and those not identified with ASD.

In so many areas of my daughter's life, she is brilliant, capable and competent--in all areas really. But, if we're not all navigating her day with her, recognizing that she's had enough of the "outside world" and is in need of down time, in need of art therapy, or listening to music alone, or hiding in our family room with the shades pulled down, shutting out all outside light and the rest of the world, things that everyone needs in their lives to navigate the busyness of the over stimulating world we now live in, she's going to meltdown and then her emotions get expressed in some not-so-healthy, mature, or aligned with her age and intellectual capacity, sort of ways.

Is that familiar to you?

Please think about presenting your story to the world in some visible place where others can see and hear it. The world needs a much better understanding of ASD...not just for others with ASD or for others to understand people with ASD, but for everyone to start seeing that our inner worlds need attention and we need to do more to bring down the stimulation on the planet, for everyone's sake. This is why you're seeing an explosion of mindfulness and mediation classes, books and workshops. The whole planet is exhausted and strained with feeling like we all need to be "ON" all of the time.

I don't in any way mean to diminish the effects of this on you. I'm certain from what you've described that you feel it more powerfully than most. I just want you to know that you are not alone--and not even exclusively having these experiences because of your diagnosis, so you're less alone than you might be aware of. It's only in connecting and sharing, as you have so courageously done here, that you get to hear that from others.

I'm a life coach--I teach mindfulness and transformative processing and work with people who are learning presentation skills for public speaking. I'd be happy to talk more with you if you have any interest in exploring that. In the meantime, start researching neuro-diversity and the polyvagal theory. These two topics alone will open up so much for you. And, by all means, sign up for a mindfulness or mediation class, workshop or retreat. I promise you will find great relief and comfort in your life by learning how to meditate and modulate in this way. It is the tool that will allow you to navigate anxiety in a healthy and empowering way.

Thank you for your vulnerable and courageous share. Do it more where more people can see and hear it. The world needs to understand and we won't get that understanding from people considered "neuro-typical." We need from what I call: ''the horses mouth," the person who is actually living and experiencing life in the ways you've described.

 

[Judge]

"Need-to-know" basis only. Something you'll see posted many times here.

Never count on one understanding and/or accepting your autism. It's ultimately a crapshoot. Not worth it unless you feel there is an absolute need to divulge such a thing. Even then, it remains a precarious thing to do.

 

[Noelle]

Most people really don't care about your problems or any of your personal issues, and it's unrealistic to expect them to. Unless someone absolutely needs to know that you're autistic, why tell them? It's none of their business. It obviously doesn't help you.

Completely agree. Could not have said it any better myself.

 

[Noelle]

I think some people may mean this as a compliment. I know I've said something similar, maybe a bit softer, to another adult who once told me he was on the spectrum. Since I had no idea what the spectrum really was, or that I also was on it, I responded with: "Wow. I never would have guessed. You're very _____ (insert complimentary adjective)"

Now that I'm the one discreetly opening up to people about my ASD, I am getting the same responses. Karma...

 

[Amy Susan Rose]

I had a terrible childhood/adolescence due to being on the Spectrum although back then that was something that was not recognized; full blown autism was but not Aspergers. I fell between the cracks and as I grew older I became better at public appearances, so to speak. But man, the social hangovers! Females present differently than males and the academics/professionals are just beginning to get a handle on that. We are better at masking, better at verbalizing (although I was not) and better at appearing more social. There are tons online regarding this newest discovery along with some fantastic books, Aspergirls and I am AspienWoman, for example.

I myself do not tell people I am on the Spectrum for I don't want them to presume anything about me. People who are not aware that there exists such a broad spectrum can speculate that I'm either odd or from another planet, I don't really care. Don't worry so much about what other people think; it takes up too much of energy that that you need to function in in this NT world. Autism--It's Different in Girls

 

[Tesseract]

I don't bother telling people anymore. Many days I don't believe I'm autistic myself. I wonder if its a personality or anxiety thing. I wrote some stuff about how I relate to people. Feedback would be appreciated.

I sometimes wonder the same thing. Maybe I'm just wrong about having Asperger's Syndrome (even though I was recently told by a psychiatrist that I do). For example, I don't need routine in my life - at all. I don't know why labels like "autistic" are so important anyway. It's just a word, and besides, since we are all supposed to be individuals (and therefore unique), holding on to a label for reasons I can't even imagine just doesn't make much sense to me.

 

[Tesseract]

Yes; many people tend to not believe Autistic people really are on the Spectrum because they don't seem to express Autistic traits or they seem a lot more NT than Autistic; also it's just plain old ignorance more than anything

And thinking that "Rain Man" was a documentary.

 

[Adora]

I sometimes wonder the same thing. Maybe I'm just wrong about having Asperger's Syndrome (even though I was recently told by a psychiatrist that I do). For example, I don't need routine in my life - at all. I don't know why labels like "autistic" are so important anyway. It's just a word, and besides, since we are all supposed to be individuals (and therefore unique), holding on to a label for reasons I can't even imagine just doesn't make much sense to me.

Even my psychologist said to me you don’t need to have all the symptoms to be classed as being on the spectrum,I’m not super routine bound but I do like predictability and security in my life and don’t like things just dumped on me out of nowhere which causes anxiety for me,even my husband reminds me from time to time that it’s not called a spectrum for nothing and while you may have some symptoms you may not have issues with others.

 

[Bella Pines]

All of what I’ve said so far make me so sound pretty weird. But in reality I appear fairly normal and do normal things for someone of my age. All of the aforementioned things don’t appear nearly as apparent as I actively offset them with specific scripts that make me act ‘normal’

Firstly, I can put your mind at ease. You are aspergers.

We have many gifts, one of the is the ability to analyse and adapt. As you get older, you will improve your scripts to the point that you will fail a diagnosis. Then, if you ever decide to be officially diagnosed, you'll have to write a script to act aspergers

Secondly, this only appears "weird" and needing to act "normal" due to statistics. Neurotypicals are currently in the majority. The definition of "normal" is "conforming to a standard; usual, typical, or expected.". Because they are in the majority then normal today is defined as nonsensical and emotionally erratic. So we are not normal, but we are not weird either, they are.

One script I remember learning when I was very young was eye contact. I did not usually look people in the eye when communicating. But my father always told me to look him and others straight in the eye when talking to them. I very quickly switched to always looking people in the eye. This unsettled them. It was only years later when I was 12 that a teacher explained to me that its important to look away from people every now and again when talking to them. So I set a timer in my head to go off every 5-10 seconds to look away.

Firstly, you have to get a handle on your symptoms and anxiety. Whatever works (and is healthy), yoga, visualizations, start trying techniques. Sometimes it's best to see the symptoms coming and avert before they hit. Once they hit you just have to ride it out, preferably in private.

Secondly, the reason that your scripts fail is because they are static and not dynamic.

If you are familiar with coding then this is like variables instead of constants, sass instead of css. If you are not familiar with coding then I suggest that as an area of interest for you to look in to.

What this means is that you need to replace 5-10 seconds with $time. Then set $time based on environmental variables. If you are engrossed in an intense 1 on 1 conversation then $time = 8s, if you are engaged in casual smalltalk (which has it's own script) then $time = 4s.

Then intertwine the scripts. The eye contact script cannot work in isolation. Combine this with the smalltalk script (select mundane topic to converse about, a) weather, b) the news c) tv/film, and combine this with eye-contact $time=4s.

Then add facial-expression parameters. If $smalltalkTopic = sad then invoke eyebrows, if $smalltalkTopic = happy then invoke smile. Apply $time variable to smile.

Do you see? You need to evolve your scripts to be dynamic based on the environment and human interactive parameters, combine scripts and practice. This eventually becomes muscle memory and you can stop thinking about it.

And it doesn't matter if no one believes you, what matters is having faith in yourself and choosing your path.

 

[WeirdoGuy]

I get this from my family members. I wasn't diagnosed until I was 32, and when I told my parents and my sister that I had Asperger's, they said "Oh, please! You do not!" My friends on the other hand either said, "That makes sense" or in many cases "That's not news. Everyone knew that already." So I'm not dealing with everyone not believing me, but I do have to deal with it from family members.

 

[Phanelope]

Yeah. I was just st told yesterday I can’t have autism because I have my life together. I don’t even have my life together. Yes, I have two degrees, but I don’t have a job from it (or any job) yes I’m married, but only because my husband is extremely patient and can put up with me not wanting to talk to him or be touched by him. Yes I raised 4 children, but it causes me meltdowns daily. I need the whole 6 hours they are at school to recover and it’s still not enough.

All of the “you can’t be autistic” people aren’t living your life, and their heads are probably too far up their own butts to even see it.

 

[arclite]

I don't bother telling people anymore. Many days I don't believe I'm autistic myself. I wonder if its a personality or anxiety thing. I wrote some stuff about how I relate to people. Feedback would be appreciated.

People are hard, I need to invest an enormous amount of energy into understanding basic things. I use scripts to help me. My scripts are incredibly complex. Like instruction manuals or algorithms built from the ground up to deal with very specific things like, gestures, tones of voice, phrases.

Combining countless numbers of these scripts together allows me to react appropriately to a specific situations.

In an ideal situation scripts allow me to function well enough to make it through encounters. In a not so ideal situation I don’t have the required scripts available and am forced to go off road and or use scripts not suited to the situation.

(people x environment x actions being taken = effectiveness of script)

New people, new environments and unfamiliar actions all increase the difficulty level of the situation exponentially. As a result certain things are very important to me.

-What is the current goal of the social unit one is interacting with? (Social unit can be an individual, group or vague collective) Multiple individuals, groups, new people all increase the variables. Less clear goals. Clear goals are very important. Playing games or working on a task with clear defines goals and or boundary’s is incredibly soothing.

Certain incoming stimuli can be very disorientating. This increases the need to know Where we are going which ties into what the groups overall goal is. Clear goals means clear destinations. Means a better idea of what kind/number of people and environments will be faced in the future.

Over exposure to aforementioned factors can result in.

-Intense anxiety

-fatigue

-headaches

-burnout/shutdown


Further issues.


-When interacting with people I become almost blind to my surroundings.

-Stimming (waving hands around, pacing, moving in odd ways) is a very important pressure valve.

-Monitoring volume and tone of voice is very difficult

-My accent is weird

-Black and white thinking

-Very sensitive to physical stimuli (will only wear certain clothes)

-Lack of inhibition

-Extremely specific interests (almost perfect memory in relation to those interests)

-Liable speak in monotone

-little awareness of other (this is actually flipped to hyper awareness of other as a result of scripts, but I miss certain seemingly obvious things very regularily)


All of what I’ve said so far make me so sound pretty weird. But in reality I appear fairly normal and do normal things for someone of my age. All of the aforementioned things don’t appear nearly as apparent as I actively offset them with specific scripts that make me act ‘normal’

I’ve been learning scripts my whole life but only as a kind of instinctive response. When I was 14 I started actively putting every ounce of my energy into learning scripts. Before then I was very self contained teenager. I was completely non functional in any group setting, and came off as quite weird in individual interactions.

Socially I was fairly reliably quite a few years behind my peers. At 9 I had the social intelligence of a 5 year old, at 14 the social intelligence of a 9 year old. From then on I developed rapidly. But at a serious cost. Like I said before scripts are incredibly draining.

One script I remember learning when I was very young was eye contact. I did not usually look people in the eye when communicating. But my father always told me to look him and others straight in the eye when talking to them. I very quickly switched to always looking people in the eye. This unsettled them. It was only years later when I was 12 that a teacher explained to me that its important to look away from people every now and again when talking to them. So I set a timer in my head to go off every 5-10 seconds to look away. Much of my scripts are like this. Specific responses to specific incoming and outgoing visual stimuli. Increasinging to crazy complex levels.

When my scripts don’t work. And a few of the bad things line up. I wont become non functional, it might not even be apparent to an outsider that anything major is wrong. I might become a little haphazard or withdrawn, maybe a little moody, or possibly over friendly. But inside I could be having a panic attack. I just let my scripts run automatically and quietly burn down in my head.

Shutdown was more common when younger, now burnout is more common. Burnout or ‘social hangover’ can lead to up to days of intense anxiety, headaches, fatigue, lethargy, depression, confusion.

I find it almost impossible to talk about these experiences to people. They nod and say they get it. I think maybe it is so alien to them that they equate the result with the cause. The result being anxiety.

0) Imagine if you will for a moment, there is nothing wrong with you, everybody has exactly the same internal experience ... equal but different to your self experience of struggle with your self experience such that certain questions become logical and or reasonable? Questions such as:

1) Why do you strive to ask questions about what others think about yourself?
2) Why do you think you have problems? Why do you call these issues a problem?
3) What if everybody has Autism but hasn't thought to call it Autism?
4) What if everybody is too busy creating solutions to their "personal awareness" of their problems?
5) If you've given up thinking there is nothing wrong with you already....
6) Why when everybody else is too self absorbed with their own non-Autistic problems to care about...
7) Why would you care to ask any non-Autistic person to empathise with your own problems?
8) What if you chose to define a good example of a solution to an internal problem?
9) What if you sought examples of different problems where you'd successfully applied the same solution?
10) What if you were at the beginning of a journey instead of at the end of the same journey?

Do you feel any different about yourself? If not, go to line 0)

What is this stuff... moment by moment stuff, colour, noise, distractions, details, STUFF!

What is this stuff? Does anybody bother to give you any tangible reply to what you mean when you ask this question. Perhaps you feel frustrated by the way other people answer the question because they talk about the objects, not the stuff of what the objects are made?

There is a relatively detailed and technical treatise on all of this within which is a sublime reference to the stuff. You may wish to read this, I found by chance a bound copy in the central reference library in Manchester, UK. But it is available for download, to read with Kindle or even to print if you have tons of spare paper!

The title is "The Lankavatara Sutra" English translation by D.T. Suzuki
(Google search)

It helped me to pose certain questions within myself that have helped me to become more aware and to realise my problems with solutions

So if a problem with a solution is a realised problem, then a problem without a solution is an unrealised problem.
The difference between a realised and an unrealised problem is the imagination!
A problem solver is a person who puts their imagination to good use!

I was diagnosed with Autism in 2011 at the age of 54! Here in the UK it is now a legal obligation for schools to assess their students for learning difficulties because everybody must be provided with an equal access to education. My generation born a long time before statutory regulation of equality became a reality are "The children time forgot", we were left to blunder through life but now as our parents become frail and die, we have nobody to help us overcome the complete lack of awareness of Autism and hostility towards the hegemony of our symptoms of Autism. Those of you who have Autism will know exactly what I am talking about. Those of you with Asperger's will know exactly what I am talking about. Those with challenged learning abilities may wish to discuss this with a trusted friend.

 

[arclite]

If I wear rainbow flag clothes and straight people come up to me to ask if I am gay, then I would say "Yes, I am on the Autistic spectrum!"

They walk away looking so perplexed (It is so good to be Autistic!)

I always try to set a good example, the above was for example purposes only