Autism Self Diagnosis

For the most part, the autism community is very accepting of self diagnosis.  This is a good thing, when the path to clinical diagnosis can be very difficult.  For those who are past childhood, some psychiatrists are resistant to diagnose autism at all, saying the person is past the age where there is any benefit to it.  Then there are those professionals who still consider autism to be specific to the male population.  And of course, then there are those who don't recognize masking or understand just how skilled at masking we can become.

Even when one finds a professional who is willing to consider the idea and understands all of the above, the process can be time consuming and very expensive.  It often is not covered by insurance making the thousands of dollars an out of pocket cost that few can afford.

Then there are the barriers of simply being autistic to begin with.  It can be challenging to seek professional diagnosis just because making phone calls, driving, and leaving the home are intensely stressful to begin with.   Having to face a professional and discuss your whole life, knowing they could decide you're not autistic or not autistic enough to warrant a diagnosis in and of itself is extremely difficult.  For many of us our familial ties are strained.  Our families may not believe there is a possibility we're autistic.  They may not want to be involved, they may lie to make themselves look good - yet they're expected to be involved in the process in many cases.

All of these factors make it daunting to seek diagnosis, especially if one is not immediately in need of assistance that may (or may not) come with a formal diagnosis.  For those of us who aren't in need of assistance, why would we expend the time and energy, the money and hardship, for that little confirming statement that we were right about ourselves?

Even when we have received a clinical diagnosis, our friends and family, even employers, may still not believe or accommodate us.  They may deny it, say we lied to get our diagnosis.  They may say it doesn't matter that we're diagnosed because we're the same person.  We may even doubt ourselves despite the formal diagnosis.  Yes, even after having been clinically diagnosed, we may still doubt that we are truly autistic.  We may feel we don't deserve the life altering explanation for who we are and have been.  We habitually feel not good enough or like we've achieved anything despite our lack of merit.

Self diagnosis and the acceptance of it is extremely important in the ASD community.  It is important we welcome those who have self diagnosed and reassure them.  It can be extremely harmful to reject those who have self diagnosed.  For one, autistics have been on the outside of a seemingly exclusive club all of their lives.  For them to finally, finally! have found a place where they genuinely seem to fit, and be rejected and excluded there too, would be devastating.  Autistic people are already at an increased risk of suicide, and the last thing we want is to tell someone they don't belong in the ASD community and have that lead to them taking their own life. 

 I think that compassion is more important than some sort of purity in the community and I'm so grateful that the vast majority of autistic people agree with this.  I myself am self diagnosed and at this time I do not plan to seek a formal diagnosis for many of the factors I've mentioned.  

I am deeply grateful to the ASD community for welcoming me with open arms.  It is a new feeling for me.  I have always felt like the person on the outside looking in, and at least now I know I'm not the only one on the outside of the glass.

We ARE Empathetic... We Just Don't Show Sympathy

There is a myth that autistic people are not empathetic.  It is a common belief within the psychiatric community, such that some people seeking their diagnosis are told they can't be autistic because they display empathy.

It's a dangerous assumption to say that autistic people are not empathetic.  For some people it would lump us in with psychopathy or sociopathy which can occur along with autism but is not a feature of autism or a comorbidity.  And, it can give autistic people an even more negative view of themselves than we already tend to have.

We are empathetic.  Many of us have to avoid watching the news, because we so deeply feel the problems of the world that it can send us into a meltdown or shut down.  For many of us, the issue is that we feel too much.  We feel it all, and it overwhelms us.  We are considerably more sensitive to the feelings of others as well as our own emotions.  It is common for an autistic person to cope with this from an early age by avoiding and locking away this part of themselves as much as possible.  We bury those feelings so deep that we sometimes don't even know what we're feeling, we just know we feel bad.

We feel it truly and deeply when someone is hurting, or struggling.  Much of the time we can sense it before we're even told - as we tend to be able to see the truth of other people even when it is hidden.  We're excellent at spotting liars for that reason.  (but we give everyone the benefit of the doubt anyway)  We genuinely want to help.  What we don't do however, is display sympathy.  We often feel extremely awkward in these situations because any type of social interaction is difficult for us and we each have a history of experiencing rebuttal and rejection for our lack of social skills and it leads us to overthink and question ourselves, especially in more difficult, emotional charged situations.  We end to freeze up and not know what to do, we fear doing or saying the wrong thing because we have done it so many times before.

So while we seem to be sitting there silently, saying nothing about the fact that your loved one just died our that you've fallen ill, we are radiating love and care your way.  We just don't say it aloud. We don't know how.

Those of us who mask, may have better abilities with this because we have been studying what other people do in these situations for so long.  Yet, when we say the words we know we are supposed to say, it feels hollow and empty.  It doesn't feel like enough.  There's a novel worth of words in our hearts, so much we want to say but we have learned that kind of gushing outpour of emotion is rarely welcome. Even if we were to say it, we'd then question if it was too much, not enough, if it is pale in comparison to the emotions, if it sounded patronizing. And that stops us again, from saying it, because we've worked out all the possibilities and we know that if we say the wrong thing we can cause an already hurting person to feel even worse - and because of how empathetic we truly are - that is the absolute last thing we'd ever want to cause.  We absolutely detest the notion of causing or adding to pain.  We know pain.  We feel ours intensely.  We feel yours.  We want to see less of it in the world and its a large part of the reason we struggle to lie or be deceitful, except where we've learned to do it as part of masking.  It's just not true to our hearts.

Now for the irony of all of this - when we see an allistic person expressing sympathy to others, we can tell when it isn't sincere.  When they're going through the motions because they're supposed to, because that's what you do.  On the surface, to everyone else, that person may seem sympathetic or empathetic but we know that they're just saying it...they don't truly feel it.  And that's not in every case, but it is common and I think many people know this about themselves even if they don't admit to it.  It's not to say that a person who sometimes expresses false sympathy is never empathetic, just that it does happen in many people, pretty often.  We autistics struggle to do anything that is "just going through the motions".  It is one of those things that our brains simply cannot fathom.  If we know we don't actually feel that way then it feels like a lie.  And we truly do not like to lie. 

Many autistic people are brimming with empathy, but it seems when allistic people say we don't have empathy what they mean is that we don't display sympathy.  It is a conundrum, when we so easily read a lack of empathy in allistic people.  It's just another way we are misunderstood.

You Could Be Autistic...And Not Know

If you've read my first post, this title shouldn't surprise you.  If you're a person who was clinically diagnosed or self diagnosed late in life, past childhood, this title shouldn't surprise you.  For everyone else, here's why:

I reached middle age before I found out that I might be autistic.  Decades of my life passed, with me having no idea.  And I am not alone.

You could be autistic too.

There are tons of people with late diagnosis of autism.  Typically autism has been seen as occurring specifically in the male population.  So females have been passing under the radar for quite some time.  The thought is that we are better at masking, at mimicking, at blending in to society, so we go unnoticed in our autism.

But, and this is my own speculation, I don't think that females are the only ones good at masking.  I believe there are males that have gone undiagnosed because they also have skill in masking.  It's also possible there are males who grew up in families that simply saw them as difficult children and disciplined or ignored the behaviors.  Many autistic people display a combination and severity level of traits that is not quite as disruptive to everyday life, to education, and can even provide advantages in those areas.  You see, autism isn't screened in everyone.  It's only diagnosed when a child's behavior causes enough disturbance that they are brought to someone who will diagnose them.  In many cases, they can even be misdiagnosed as something else, like ODD or ADHD when it is actually, or also, autism.  So many kids, especially those from poor or abusive homes, will never be diagnosed.  If they're lucky, they'll figure it out as adults but there are large barriers to adult clinical diagnosis as well.  Psychiatrists may not be as well versed in diagnosing autism in anyone other than a male child who doesn't mask.  Everyone else can just wonder what's wrong with them all their lives until they figure it out or.... don't.

So yeah, you might be autistic.  If you've always felt different, have sensory sensitivities, have discomfort or difficulty in social situations especially eye contact and small talk, or you find yourself unable to keep still, frequently doing some sort of repetitive motion, it's worth looking further into it for yourself.

Here are links to some quizzes that can start to shed some light on the question.

This first one gives you a graph!  (Which I am clearly excited about)

https://rdos.net/eng/Aspie-quiz.php

https://exceptionalindividuals.com/candidates/neurodiversity-resources/neurodiversity-quizzes/autism-quiz-test/

https://www.wired.com/2001/12/aqtest/

I Am Autistic

I have arrived at middle age, a lot of years behind me. It's been a long, hard road. I have felt misunderstood, I have felt outcast, I have felt like I was on the outside looking in. I have wondered why I find it so difficult to connect with people and to maintain friendships. Why something as simple as small talk and eye contact is so difficult for me. I've wondered why I feel like an alien. Like, genuinely, from another planet.

I think my experience has been tinted by being an artist. I kind of accepted my being different because I have a creative mind, chalked it up to me being an eccentric artist. It's a common enough stereotype that ... I was mostly satisfied with that.

But it doesn't actually explain my social difficulties or my sensory issues. It doesn't explain why I so enjoyed lining up my toys when I was a kid, or why I would just hit a breaking point and have what I now realize was a meltdown.

I just thought it was me. That I was alone in my unique brand of weirdness. I've known a lot of "weird" people but I didn't even mesh well with most of them.

Years ago, a friend of mine who is autistic looked at me in the middle of our lunch conversation and said "you know, you might be autistic". I brushed it off. I didn't really consider it. At the time, I didn't really know what autism was. Most of my exposure to it, surprise surprise, came from movies, tv, and such. Which, I realize is a terrible resource to learn about something. But I never saw myself in those characters... well... maybe one of them. That would be House. But only a little bit. In retrospect, now that I am more aware of the trope of the Manic Pixie Dream Girl, yeah... I match up with a lot of those characteristics. Right down to how guys I've had relationships with have seen me.

I didn't think that I stimmed. I didn't realize my sensory issues were... well... sensory issues. I always knew I thought differently, my favorite way to explain it was that most people go from A, to B, to C, to D, where my brain seems to go straight from A to D. It just ....takes a different path. I arrive at conclusions much more simply and easily than others do. I just assumed that was a feature of what I was told was a high intelligence.

I thought... I make eye contact. I can interact socially. Sure, eye contact is super uncomfortable and I spend the whole time trying to figure out if I'm doing it right.... but I do it. I can talk to people casually, and force myself into small talk if I feel it's necessary, but again, I spend the entire time hyper aware of every little thing I am doing. I'm monitoring my every gesture, the tone of my voice, my facial expressions, trying to make sure I'm doing it right. And I don't know if this is because it's just always been a part of me, but I guess I never really thought about how easy all of this seems to come to other people. I guess I just thought it was me being me.

But then I watched a TED Talk by a girl who spoke about how she is autistic, like her brother, but went undetected... unlike her brother. He was diagnosed earlier than her. The reason for this is because she adapted and masked her autism from a young age, made it invisible to the outside world. While she appeared to be allistic, the reality inside of her was that she was struggling because she was constantly juggling masking and just trying to live life and accomplish the things we must accomplish.

It put a bug in my ear for a second time. I remembered back to what my friend had said over falafel. Maybe it was worth looking into deeper.

Still, time passed. Nearly a year. I felt like autism was some how too good for me. It was like I thought I didn't deserve it. I discounted the things that made me feel like I could be, I wrote them off as coincidences. But I didn't know enough.

A couple of months ago, on a whim, I started watching more people talking about their autism on YouTube. I heard them say things that I had felt or struggled with my entire life. I suddenly felt seen and understood. These people were describing me. They knew me better than most of the people I have ever known.

I dove deeper, I took quizzes, I joined Facebook groups. I read and learned. And........

Then I self diagnosed.

From tending to want to walk on my tippy toes when I'm barefoot, especially when I was younger to my intense avoidance of eye contact with people I don't know, to the realization of just how much I stim, in how many ways. (Hint: it's a lot.) I started to realize all the autistic traits I carry and what I've struggled with since childhood.

Of course, I still doubt myself. I have imposter syndrome, I've known that for years because it's appeared in other areas of my life and I looked into it. Every day I wonder if I'm actually autistic. And every day, I hear something from someone who is autistic that reaffirms that my self diagnosis is correct.

Even if it isn't, I fit so well into this community that it would genuinely surprise me.

So here I am, two months into the realization that I am autistic, and finding answers and a community that is slowly changing my life.

I'm autistic...and I get it now.