Q & A: As a parent of a child on the autism spectrum, what is something that you wish other people understood about your child?

It’s not personal.

Kids on the spectrum do not behave as expected. Even if they’re “high functioning” (oh, and how I loathe that term!) they’ll do things “normal” kids simply don’t do. And because humans are unique these behaviors are often difficult if not impossible to predict.

In one memorable incident my friend’s mother was driving the carpool to school. She was complaining (as she did every morning she drove) that she was never on time, there was too much traffic the sun was too bright and every time she was stuck driving the carpool it ruined the rest of her day. Considering her words and how often I heard them, I turned to her and said “Maybe you need to change your routine.”

She was absolutely shocked I’d dare to say such a thing, especially because I was all of nine, maybe eight. After she gathered her wits she snapped “Maybe SOME people need to mind their own business!” Then it was my turn to be shocked. This woman was deeply offended, hurt and angry. I could feel the emotions pouring off of her even as the kids in the backseat (I was riding shotgun) grew unusually quiet. Why was she angry with me? I had listened carefully to her complaint and offered what I though was a constructive solution. I wasn’t being a “smart ass”, as I was accused of later.

As the offended adult was unquestionably right, I was kicked out of the car pool immediately. None of those kids ever spoke to me again. The feeling of injustice was so profound that I can recall the entire incident to this day right down to what everyone was wearing – this from someone who can’t remember breakfast.

Incidents like this gave rise to what became a legendary temper. I gained a reputation for flying off the handle at the slightest thing, when really I was just sick to death of being accused of things I didn’t do, or saying things I didn’t mean – it was just misinterpreted. To this day if you want to see me go from zero to homicidal in one second flat accuse me of lying. About anything. I feel that way when I get carded (I’m NOT trying to break the law you son of a bitch…) or when they check my receipt at Costco (I’m NOT A FREAKING THIEF!!!).

In summary – people who aren’t autistic… it’s nothing personal. We simply don’t play your reindeer games.

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Q & A: Did your child get autism after vaccination?

We need to put this to bed. Let’s play myth buster – Autism edition!

  1. People on the spectrum are born that way.
  2. Autism is a neurological disorder, not a mental illness
    1. It’s possible that someone on the spectrum is also mentally ill, but it’s not a given.
  3. Autism can not be cured.
  4. Autism is not contagious.
    1. You don’t “get” autism, you can’t “catch” autism.
  5. Either gender can be born autistic.
    1. It was thought that only boys were autistic.  I am not a boy.  However, autism does manifest differently in girls than in boys.
  6. Autism is not a behavioral choice.
  7. A child’s environment does not cause autism.
  8. People are not autistic because of something their parents did to them when they were young.
    1. There’s a theory that autism might be caused by something that happens to the mother before the child is born, but it’s only a theory.
  9. Autism does not indicate that someone is reactionary or weak-willed.
  10. Autism is not something you grow out of.
    1. People often pick up coping skills as they grow older. This sometimes creates the illusion that they grew out of the symptoms they experienced as a child.
  11. Individuals on the spectrum aren’t all geniuses.
    1. Some are, some aren’t. If they are it’s usually specific to a certain area. In pop culture Sherlock Holmes might be the greatest detective who ever lived, but he didn’t know that the planets revolve around the sun.
  12. Individuals on the spectrum are able to learn.
    1. With a few exceptions.
  13. People on the spectrum aren’t inherently violent
    1. I am, but many are not. I become violent when my senses are overloaded or I feel an overwhelming lack of control.
  14. People on the spectrum do have emotions
    1. Autism doesn’t make someone cold and distant. Being constantly bombarded with way too much sensory input often results in someone on the spectrum withdrawing. Imagine if you were in a cage with 1,000 screaming monkeys and no way out. Sometimes going “within” is the only way “out” there is.
  15. People on the spectrum are anti-social
    1. Yes and no. We’re not typically anti-social, but speaking for myself I have very few friends. That’s because my bs meter is set to nearly zero. I don’t put up with the little white lies and rationalizations that pepper so many conversations. I don’t engage in social niceties as they seem a completely pointless waste of time. Because of this people usually don’t enjoy my company, nor I theirs. But this has nothing to do with wanting to be alone. Being alone is simply an end result.

Q & A: Should you tell your friends, family and employer you are bipolar?

When I was first diagnosed I thought “Hey! I’ll be the change! I’ll tell everyone, and open up a meaningful, constructive dialogue about mental illness! I’ll start getting rid of the taboo!”

Boy did that work out well!! <NOT>

My family seemed kind of obvious. I had to tell them, if for no other reason than to explain my behavior of the past 30 years. And in that sense it worked well. But in another sense it was… not great. My parents felt guilty they hadn’t caught it much earlier. My brother didn’t believe it at all – he thought (still thinks) I just found a good excuse for being a bitch. Oh, and that I should get a job and stop feeling sorry for myself. (sigh)

My extended family accepted it at once. How else could you explain anyone so odd? But from that point forward I was completely disregarded. Trying to explain Bernie Sanders and his idea of socialism, they did the social version of “tut tut dear. Don’t bother your pretty little head about things you can’t understand.” I tried to warn about the rise of fascism. Same results. I was dismissed to a man. Their other reaction was worse. They put up with me because it was their Christian Duty <tm>. They pitied me in my tragic state, and so tolerated my odd ideas of fascism, socialism, at least until election day 2016. Then they told me to stfu, because no one wanted to hear me any longer. Oy.

Most of my friends were pretty cool about it, but only because they already knew. They didn’t know the exact name, but knowing I was nuts… it was obvious. And I didn’t have many friends to begin with – a consequence of being bipolar to begin with.

I told my neighbors, so they’d understand what they were living next to – so they wouldn’t judge me too harshly when I was having a bad day. And I immediately became a social pariah. Little kids were frightened of me (no doubt warned away by concerned parents), no one would meet my eyes. I didn’t have an employer, but I’m sure no good would have come from my confession had I told them.

Your mileage may vary, of course. But my opinion of being open about it, starting a constructive dialogue, has changed 180 degrees. If you’re in a relationship you have an obligation to tell them. The rest of them… really think about it before you tell them anything.

I wish you the best!

Q & A: Can you please explain what you mean by you have been diagnosed with both? Meaning Bipolar AND Borderline personality disorder?

“… Please explain how your doctors came to this second diag. of Borderline and how is it different of adding to your already Bipolar condition. I believe I am suffering from more than Bipolar because of my rage that has become very violent and I am NOT violent person ….?”

I was originally diagnosed as Bipolar I / Psychotic. Each diagnosis I received after that was “in addition to”, rather than “instead of” the Bipolar diagnosis. I am both Bipolar and BPD, as well as several other things. I was in therapy for years after my initial diagnosis – expanding the original is apparently a common part of the process.

I **COMPLETELY** understand what you mean about the rage. Man, when it gets going… it’s like a bloody force of nature. I never thought of myself as being a violent person either. Until, one day, I was. So here’s my understanding of how the two conditions work together. I must put the disclaimer here that I’m not a medical professional. I’m simply a patient who has observed this from the front lines for 20 years. With that being said…

For some conditions I really disagree with the phrase “mental illness”. It makes it too easy for the uninformed to conclude that it’s all in our heads. Bipolar is a physical illness – a chemical imbalance – that manifests via wild mood swings and (in the worst cases) irrational behavior. When I was manic I’d be extremely hyper. I’d be the life of the party! I’d have wild sex! I’d spend money like it was nothing! I’d sign up for a college degree!! Hell, I’d TEACH the class! Let’s move across the country and get MARRIED!!! I want a baby! NOW!!!!!!!!!! Everything seemed like a great idea, easily accomplished. The fury I’d feel if someone stood in my way was hair-trigger, irrational, immediate. Dangerous. Very dangerous. I still find it hard to believe I didn’t kill someone. Seriously.

As the manic phase passed I’d become somewhat lucid. Everyone I made all those promises to expected me to hold up my end of the deal . Which, six months ago, sounded like a grand idea! Only now my more lucid self is thinking… what the heck just happened?? What did I do? WHY??? My creditors were screaming at me, my phone would ring non-stop, my fiance was just confused… I’d burn bridges as fast as I made them. And that’s when I was lucid. The Depressive phase of Bipolar was still ahead.

Once into the Depressive phase I’d feel nothing but self contempt and loathing. How could I do that? How could I say those things, promise those things? I just let everyone down, how can I face them again? I can’t even explain why I did it! The anger turns inward. Homicide becomes suicide. I’ve made three serious suicide attempts, maybe half a dozen less serious. You should see the scars – they’re impressive! There were days I couldn’t move, much less get out of bed. And if, for some reason, I really did have to move, God help anyone who was close. The Beast would be roaring, screaming in pain, fear, confusion. And ultimately anger.

Repeat.

So if that’s Bipolar, where does Borderline come in? Unlike Bipolar, Borderline is a personality disorder. I love this definition:

“Personality Disorders are a class of mental disorders characterized by enduring maladaptive patterns of behavior, cognition, and inner experience, exhibited across many contexts and deviating from those accepted by the individual’s culture.”

Personality disorder – Wikipedia

The key phrase here, for me, is “maladaptive patterns of behavior”. “Maladaptive” is defined as “not providing adequate or appropriate adjustment to the environment or situation.”

So an adaptive pattern of behavior is an appropriate adjustment to the situation you find yourself in…. right? Right. Here’s the catch. Most people who are bipolar don’t know they’re bipolar until they’re diagnosed by someone outside of themselves. In my case, I was out of control with absolutely no idea why between the ages of 12–30. Eighteen very long, very confusing years. Or, roughly nine complete Bipolar cycles. That’s a lot of water under a lot of burned bridges. I couldn’t explain what I was doing or why. But the rational part of me was somehow held accountable for all the actions my irrational illness was performing. So I developed symptoms of Borderline in an attempt to make this wild merry-go-round of emotions somehow make some sort of sense. I didn’t deliberately set out to do it. I simply developed certain coping mechanisms that helped me endure the madness of the situation.

There are four types of personality disorders: Odd, Dramatic, Anxious and “other”. Borderline is part of the second group – “Dramatic”. They’re characterized by “dramatic, overly emotional or unpredictable thinking or behavior and manipulative, exploitative interactions with others. “

Cluster B personality disorders – Wikipedia

Personality disorders are “inflexible and pervasive” for a reason. Something within you thinks your survival depends on this behavior. The only problem is that situations change – personality orders do not. For me, once I received my initial diagnosis I was able to say “Oh, so THAT’S what’s going on! I get it!” My logical, rational side now had something to grab on to. Unfortunately, my emotions and behaviors were already set into that “inflexible and pervasive” pattern by default. It’s understandable damage from living with Bipolar so long. My poor brain had no tools to turn my reactions off, since 18 years of experience had taught it (beyond any doubt) that everything was about to blow up. Again. GET READY!

So that’s how I came to be both Bipolar (born with it) and Borderline (developed it due to the Bipolar). Someone with this diagnosis usually sees both a psychiatrist and a psychologist. The psychiatrist can prescribe medications to help level out the physical symptoms of Bipolar, while the psychologist can give the patient emotional tools needed to deal not only with the mood swings, but also with the fallout.

Q & A: What does society get wrong about those on the autism spectrum?

I can’t speak for all of society, but I can speak for myself. I associated autism with the most obvious physical symptoms of Down Syndrome. The rounded appearance, the odd gait, the stereotype. When I started researching what was wrong with me a voice in the back of my head, very early on (let’s call it “common sense”) said “you’re autistic”. My reasoning, superior intellect voice said “don’t be ridiculous! You’ve got amazing reflexes! You’re an athlete and could have been a model at one point. You’re gifted in communication. You don’t rock, flap, screech, scream or look rounded. You’re not autistic.” To which common sense whispered “… yes you are.”

It took me years and years and years to overcome my bias and prejudice against those who are autistic to admit I might have it. And several years after THAT to get tested. And now, two years after the diagnosis, acceptance is still a long way away.

So. What I got wrong. Autism CAN mean rocking, flapping, making odd noises, etc. But not always. In me it means ill adapted socially, lightening quick in many other areas, can’t solve for “x” (NOT NOT NOT my fault!!! NOT NOT NOT a character flaw!!!) but can understand theoretical physics (even if I find it nearly impossible to spell). It doesn’t negate you as a person (no matter what you privately think). I’m working on that last bit.

Q & A: How do you find a patient advocate? Do they cost money or can you get one for free?

Thanks for asking for my advice! If you’re in the hospital, there should be a patient advocate on staff. I found this out the hard way!

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The first time I was in a psych ward it was for quite a while. So long, in fact, I don’t actually know how long I was there! Long enough to get a bit better, anyway. But my first few nights were really rough. I’m a chronic insomniac anyway, but put me in a strange place, a strange bed and with a roommate who talks in her sleep…? It wasn’t going to happen. I tried to explain this to the nurses, but they’re not used to people telling the truth. They ARE really used to people lying to get drugs though. So they blew me off, but put me on a suicide watch.

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Grand! So now I’m in a strange place with someone peering through the window at me every 15 minutes, and don’t forget I’m locked in. It’s basically jail for crazy people, obey or we get the coat that ties in back and the rubber room. I can’t sleep and I’ve been commanded to sleep. I must sleep or it will be seen as being willfully disobedient. Um, guys? So I started having a panic attack. I went back to the front desk and told them what was happening. I told them that my best friend was used to talking me through night terrors, and it would really help if I could talk to her. It was 10 minutes after they had turned off the phones for the night, but could I please call her? It would help a lot and might let me sleep.

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They were starting to get nasty at this point. I was to go back to my room, lay down and SLEEP immediately. Anything else would be a violation of ward rules. Oh yeah. That helped. I did as commanded, as much as I could. I lay there listening to my roommate babble, and waved at the nurse every 15 minutes when she came to check that I was still alive. This went on for a few hours. Then the nurse brought me a cup of pills. She refused to tell me what they were, but assured me that absolutely no one could stay awake after taking this cocktail. I was so grateful, I didn’t ask any questions. I just swallowed it down. And… it didn’t work. I think that sort of freaked them out. I was not only wide awake every time they checked on me, I was actually kind of wired. Welcome to the wonderful world of manic episodes!

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Anyway… I was convinced that this whole horrible night could have been avoided had they let me talk to my friend for just a few minutes. The girl just knew exactly what to say when I was climbing the walls. Instead I was threatened and finally drugged then threatened again. Most of the horrible things I had galloping through my brain were now firmly stuck there and I was jumping at dust bunnies, I was so nervous. The moment the shift switched to the day crew, I went back to the front desk and demanded to see a patient advocate. Man, THAT got some serious attention! They wanted to know what happened, why I asked for the advocate. I refused to tell them, or even speak to them, until the advocate appeared. And that happened pretty damn skippy!

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She took me into a back office and I told her what I just told you. I invited her to check the records to verify my story, and assured her that the night crew had screwed up just about every way possible. I also told her exactly how many times I waved at the night nurse – what else was there to do but count?

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Bottom line, I was transferred to a private room. The staff was MUCH friendlier from that point forward. They even let me use my computer (supervised, of course). I couldn’t go online, but I didn’t want to. I just wanted to play The Sims. 😉 I was there so long I taught half the nurses how to play by the time I left.

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I don’t know what you’re going through, but if you’re reaching out with this question I’d definitely ask to speak to the advocate. If you’re worried about finances make that your first question. But do talk to them if at all possible. Make your case about whatever’s going on – give them facts, try not to editorialize. But at the same time explain where whoever it is dropped the ball, and the potential consequences you have experienced, or fear you may experience in the future. That’s why they’re there.
Good luck!

Q & A: What does bipolar disorder feel like emotionally to you?

I think I can answer this best in photos. For the uninitiated, Bipolar means intense mood swings. Crashing highs, hellish lows. It’s a cycle – mine was 2 years or so. 6 months lucid, 6 months manic, 6 months lucid, 6 months depression, repeat. It’s never that neat – it’s just an example.

  1. Start as lucid:

Hi! This is as normal as I get. I really hope you don’t know my terrible, hidden secret. I’ll do everything I can to keep it from getting the upper hand this time. I’ve gone a while now without an incident…

 

2. Phase into Manic:

Oh no. No you Didn’t. You Did NOT JUST GO THERE WITH ME!!! (see how quickly it escalates?)

 

3. Full Manic state:

I don’t know why I’m angry at the entire world, but it’s not just anger. It’s the burning fire of 1,000 suns. It’s directed out. No one and nothing is safe. Things are broken, holes are punched. Also, credit cards are maxed. Sex is had. LOTS of sex.

 

4. Phase into lucid:

The returning ability to think comes with a sense of confused frustration. Without a diagnosis (I was diagnosed Bipolar at age 31) I don’t know why I behaved as I did, so I can’t give an acceptable explanation to anyone I encountered/wronged (the list is long and colorful). I’d usually end up defensive.

 

5. Phase into Depression:

The confused frustration phases into a tired sense of defeat and hopelessness.

 

6. Full Depression:

Unable to account for what just happened, the anger now turns inward. Instead of homicide, suicide is now quite likely. In addition to the mental stress, Clinical Depression is physically painful, as well as exhausting. Even knowing I’d fail a class or be fired from a job, there were times when I physically could not move.

 

7. Phase into Lucid:

Um… what just happened? Did anyone get hurt?

And….

 

8. Back to Lucid (return to top, repeat every 2 years or so, six months per phase, from the age of 12 on)

Standard Disclaimer: I obviously do not own the character of Bruce Banner or the Hulk. I intend no disrespect to Mark Ruffalo or to in any way imply he is Bipolar. This is simply an example.

Q & A: Do people with bipolar disorder devalue the same way as borderlines?

Not that I’m aware of. They’re two entirely different conditions, though I understand how people who don’t have them might confuse them as being similar. I’ve been diagnosed with both, so I’ll try to give an example of each.

Bipolar is largely defined by wild, often dangerous mood swings. Mine is usually blazing, murderous anger. When I’m manic I can turn it outward, toward others. When I’m depressed I turn it inward, toward myself. Either state can result in murder in the right circumstance.

BPD is largely defined by emotional swings. I LOVE YOU!! I WORSHIP YOU! YOU CAN DO NO WRONG (switching abruptly to) I HATE YOU HOW COULD I EVER TRUST YOU? YOU’RE DEAD TO ME.

One doesn’t necessarily lead to the other, you don’t have to be Bipolar to have BPD and vice versa.

Q & A: What are some things I can do to help out a terminally ill best friend?

Whenever I’m in the hospital, I find that one of the strangest challenges is how to deal with visitors. On the one hand I’m really lonely, I’m overwhelmed, I’m sick, I’m drugged and sometimes I just kind of feel sorry for myself. But at the same time I’m very aware that I look like crap, I’m in pain and I haven’t slept well at a time when I REALLY need quality sleep (they keep waking patients up to run tests CONSTANTLY – what the heck is up with that??) So while I really look forward to visitors, I also dread the idea that I have to somehow play host, or be on my best behavior. Somehow it often switches from them showing me support to me having to be strong for them, because they’re more freaked out than I am!

If your friend is at the hospital or at home, keep in mind that this is just as weird for them as it is for you. Be patient, but be yourself. Listen when they talk, especially about their fears. It’s strange to say “I understand”. You probably don’t. Go for sympathetic instead. “I’m here for you.” Be prepared for mood swings. Depending on how much stress I’m under, what tests the staff has done or what drugs they’ve given me I can get very snappy and irritable. If your friend goes there again be sympathetic, but don’t let them use you as a punching bag either. It’s a really strange dance.

Most especially, remember that you’re not at a funeral. Your friend might be dying, but they’re not dead yet. I say this because a certain reverence is afforded to those who have a terminal diagnosis. This attitude mostly benefits those who will survive – they’re already in the process of coping with grief, sometimes even before their loved one passes away. DON’T do this. Do you have inside jokes? Things you have in common? Keep talking about those things. Favorite movies? Foods? Hobbies? Events? This isn’t a time to focus on death, believe it or not, but to celebrate life. Every moment is precious now (though actually, they’re all precious…) They’re not going to forget they’re dying, but they’re not there yet. If you can find a way to play without hurting them, do it.

I wish you the best!

Q & A: Do animals experience mental illness or are those conditions unique to humans?

Mammals are extremely complicated creatures. I’d actually think it more unusual if they didn’t experience mental illness. Certainly there’s no question that creatures apart from humans suffer from PTSD. Find any animal recovering from an abusive situation if you require proof. My terrier is terrified of large trash bins. I’ve had her for nearly 10 years and I’ve certainly never menaced her with such a thing. But whoever she was with before probably did, and she remembers. My big dog has severe anxiety if someone starts shouting. She flinches at any loud noise – firecracker season is a living hell for her. I’ve only had her for a year, and normally she’s extremely loyal but mellow overall. The way she carries on I wonder if someone lit firecrackers near her once, or maybe her former owner took her hunting.