YOU ARE NOT ALONE - A companion online community discussion board for The Mental Illness Happy Hour podcast with Paul Gilmartin

I first want to say that not every person with autism has the same symptoms. I'm just one guy.

Most people don't believe I'm autistic. That's because I really know how to appear calm and in control. I had to learn that skill to avoid setting off my emotionally abusive guardian. But the calmness and control are entirely fake.

I have what I call "autistic freak outs." Essentially it's a temper tantrum (you know, like a 2 year old has) except I'm a large man so if I don't do everything I can to stay calm I could do damage. The effort I expend keeping control makes me exhausted. By the way, the last serious freak out I had was caused by someone I worked with asking for my phone number. That's all it takes sometimes. And once it's over I hate myself all the more because I'm not an angry person and I hate the feeling. Fortunately I can usually tell what might set me off so I can avoid it. I only really have a freak out every few months.

I don't parties or anywhere that is loud and crowded. It's hard to explain the feeling I get in these situations. It is almost anxiety, but more. I see everyone else having fun, and I just want out. But here's why I can't leave; I went there with a friend or a few friends. I assume I'm always one rude action away from everyone cutting all contact with me. And in my mind leaving early qualifies.

I really don't know what people are thinking or how they are feeling. So unless you are smiling or laughing I assume you are mad at me. I constantly feel the need to be told I'm not ruining everybody's day. Though, if someone said I wasn't I would assume they were lying to keep me from feeling bad. Which would mean I am an unwanted presence among polite people, so I feel bad.

I want to be a comedian (probably because I can tell how people feel if they're laughing). I do ok on stage because there is a separation between the crowd and me. But I have a lot of difficulty relating to how other people feel. So I write jokes that are crazy offensive. Before I do a bit for a crowd I try to decide if it's too offensive. Then I have to go to several people and ask what they think.

I'm having trouble expressing my feelings, so I'm going to just list some of my more annoying symptoms.

I like black and white. Shades of gray are hard to understand.

Sex is almost impossible to discuss.

I can't spend a lot of time hanging out with people because I run out of social.

Whenever I'm happy I also feel nervous. No idea why.

I don't know how I made my friends and I have no idea how to make more. Which is fun because I'm moving out of state soon.

New things are really nerve wracking.

I constantly regret things I've said or written online. Even if it was completely innocuous and nobody else even remembers it.

I ruminate about every social interaction. I just know I messed up somehow and upset whoever I was interacting with.

I'm exhausted from writing this.

Hello Joseph K, welcome to our little forum!

I also have the diagnosis of autism, and I relate to what you say. I hate that I am never asked to explain things or help in my fields of competency because the way I explain things to people makes them feel nervous, makes them confused, and makes them feel dumb, even though I try *SO* hard to be calm, clear, and empathic.

Rumination was helped with drugs and, when I had my breakdown at age 25, my "gives-a-care-about-what-people-think" got burned out, because I cried and cried thinking about how much I cared about what other people thought, but still my management of their experience left me with an empty worthless hopeless life. I don't recommend having a breakdown.

I can speak at work meetings and such, but I need two full days of sleep to recover from speaking for longer than 10 minutes.

Every two years or so, I have a horrific episode of rage.

Please take care, Joseph K, all the best to you, we here are all cheering for you and for your greatest today and tomorrow!

I'm the mom of a 10 year old high-functioning autistic boy. Reading about both of your struggles - odd as it may sound - it gives me hope.

I hope that my son has the ability to write so eloquently about his struggles and give a voice to his feelings. You are leading the way for younger boys and girls behind you. Autism is SO different for every person. By speaking about it, writing about it, and living through your struggles - there is so much for "people on the outside" to learn.

Thank you for sharing!

-zipper.

Joseph, what you are describing is not a tantrum. It is a meltdown. The difference is you aren't doing it because you are spoiled but because you are stressed. You feel guilty afterwards and shame for having acted out. That is the key difference visible to others that you are having a meltdown. You have sensory issues that others don't deal with. I like to tell people it's like turning up the volume on the television all the way and then trying to talk to people as if you are the only one who can hear it.

You know why you are tired after going out? Well, anyone given enough stimuli will be equally exhausted. I don't know if you've ever been to Disney but everyone came back from there so tired and it wasn't just from the walking. The whole park is set to stimulate all your senses (we actually have about 20, not 5). For you the whole world is set to Disney level stimulus. The lights hum, people sneeze, textures are painful, showers are like needles...there are so many issues you deal with that others don't. Most people can filter information but people with Autism have trouble doing that, unless you are hyper focusing. I watched a documentary last night where a Professor claimed 90% of all the inventions since the industrial age have been created by people on the spectrum because we have the ability to become experts on unique things.

What I'm saying is that you aren't giving yourself enough credit. Anyone who is so overwhelmed by this constant stream of information is going to have a hard time fitting into social society. People do not give those on the spectrum enough credit for what they deal with. It's not just sensory issues but motor functioning, communication, working memory...the list goes on and on. Don't let anyone push you around and tell you that you aren't trying. I'm gonna make an unpopular confession here but my husband is a Psych. Major who's planning on going clinical with a preference for ABA (for PTSD, not ASD but believe me we talk about it often) and this is our main point of contention. Wow, we go at it so often. In his mind it's less important to focus on sensory issues because his job is to get people prepared to be accepted by society. My point of view is that places extra guilt and pressure on someone on the spectrum to perform while also dealing with so much more. He counters that with the fact that life isn't fair and some people have to work harder and rather than go down the whole debate I'll just tell you this. You don't have to feel guilty for being born the way you were born. If you feel someone is pushing you in a way that makes you feel shame for being on the spectrum that person is wrong, not you (even your therapist). That doesn't mean they are a bad person, or that they don't care but that they are wrong as we are all apt to be about some things. It won't help you to be accepting of yourself if you focus on what you can't do or to think you aren't trying hard enough. The thing is everyone knows this. Parents know this, doctors know this, peers know it too. That is the very nature of a disability. You have every right to be angry and frustrated and depressed. So far as I know Autism is one of the few disorders where it's acceptable to focus on your deficits and it's my opinion that sucks. That's personally offensive to me, like bigotry level offensive. If it were up to me we'd focus a lot on Autism superpowers. When I was diagnosed the first thing I was told was that it was okay because I could try harder and not be Autistic any more. What?! You can learn to pretend really well (for example, I'm currently in a gestalt therapy group to learn social skills) but you still have all the neurological differences that make you Autistic or at least an outlier so far as how your brain is wired (more white matter, think of it as having a LOT of RAM but not so much memory).

I have a book suggestion. My husband has been learning about ACT and it's pretty awesome. It's under the umbrella of ABA. I have a hard time reading books so I download them from Audible (not an intentional plug). There is a great book titled, "The Happiness Trap" but it's not on Audible so I downloaded a similar book called, "The Confidence Gap." Also, everyone who can should read, "Neurotribes." That is on Audible too. We are part of this cool neurodiverse world and every day we are getting closer to being allowed to wave our freak flag high. Soon enough we won't have to worry about being fired or not hired because of our awkwardness. More and more people are understanding. How can they not be? Almost everyone knows someone on the spectrum.

Good luck! I hope you are going easier on yourself.

I forgot to mention that you can learn to pretend but when you get stressed and overwhelmed that mask you are keeping up (which comes naturally to everyone else) is going to come down. Think of it like being in a play but you are the only actor. If you have a trauma or a series of smaller problems that lead to overwhelming stress you are going to drop the act as anyone would. So with every meltdown you have it would be more logical to assess what thing or things are making you feel overwhelmed and minimize the damage by making your environment more inviting (dim the lights, wear soft clothes, keep the air comfortable et. cetera). If you are in a place where that isn't possible at least you have the comfort of knowing what is really going on so you don't feel so much shame or guilt. My main objective is less on how you perform in public and more on minimizing the negative emotions that are so common in ASD's.

People don't think about it but suicide is extremely common for Autism. I read a peer-reviewed article written a few years ago (DSM IV, Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study) for Aspergers which 35% of the hundreds studied had plans or had attempted suicide. I would be in that 35%, myself. I can only imagine it's similar everywhere on the spectrum. So please please treat yourself well. In fact, I'm trying to take my own advice. I found that I was making plans with all the shit I was trying to hide in an effort to appear "normal." I know my brother has been suicidal and he's still a teenager. I can see my husband's point of view but I also don't think his view is helping to minimize the suicide rate that comes with trying so hard to mold yourself to society. He thinks society won't change but I think it can (I'm an Anthropology Major - kinda comes with the territory). I want to teach Autism acceptance. There are many hurtles and I'm not sure of the correct path or the best answers but that is my main goal.