The Case for ABA

Why I put my son through a controversial, damaging therapy

TRIGGER WARNING: I talk about Applied Behavior Analysis and its practical applications in this post. But for those that experienced trauma from ABA, there may be nothing practical about it, and should not read this.

Before I go any further, I want to make a statement about the abuse allegations against traditional Applied Behavior Analysis Therapy, or ABA. I think they are absolutely true. It’s not really a question that forcing children into a behavior that is unnatural for them is bad. That is a bad idea. I also think it is the worst application of ABA imaginable.

You see, the therapy itself, is not what is damaging. It is how it is used. It is only a tool. It’s like a syringe. With the right content, it’s a life saver, with poison.. well, you’re done. (I know, I know, this is technically the kind of semantics the gun lobby uses. Guns don’t kill people, people kill people. But the gun sure does make it easier, right?)

So with that in mind… Why would I, a neurodivergent person, who believes in the autonomy of autistic people, put her son in ABA therapy?

Trust me, it’s not easy. Everyday I question if it is the right choice. And everyday I weigh the benefits over the consequences, and choose whether I want him to continue.

And before I go into my reasons, I would like to refer you to an autistic adult who actually went through ABA. His opinions are the same as my own, but he has the legitimacy of having actually been through ABA therapy. And here is another account of an autistic man who went through traditional ABUSIVE therapy. His description of forced eye contact triggered real panic in me. His argument is very good. Back to my post…

Again, why? Why would I do it? There are two reasons…

Continue reading “The Case for ABA” →

Therapy Roulette

I would not say that I am an expert at therapy, but I have certainly had my brushes with the noble art. Some of them I have written about in this very blog, like poor Marueen, others I have been rather tight lipped about. But I think, just as we need to be more open about therapy to reduce the stigma of getting help, we need to be more honest about the quality of the help we are receiving. And what to do if your therapist just doesn’t get it.

So just like with poor Maureen, the names have been changed, not to protect the innocent, but because I honestly don’t know what the protocol around that is. (And you know my love/fear of protocol.)

Let’s start with the most recent former therapist. Rodger. He was actually a fantastic counselor. I met with him after my sister suggested I try online therapy at a particularly rough time for me. She sent me to betterhelp.com, and it was not false advertising. Up until now, it was the best help I had ever had. He was a veteran of the war in Afghanistan and specialized in trauma as well as addiction. I had no problems with addiction but he also had experience with bipolar and LGBT issues, so when the website set us up, I went with it.

Like I said, he was one of the best counselors I had ever had. We would meet up online, and even though you can do video chat, I chose to text chat. That is just a better situation for me with my social anxiety. He was a bit of a typo guy, but his advice was really solid. This was so much better than the last therapist I had… His name was Jack.

Oh, Jack. I will always think fondly of Jack if only for the material he gave me. I came to him when I was in a particularly horrible phase of my mental health rehabilitation. I was going through awful medication side effects that included- night terrors, panic attacks, nerve damage, skin irritation, deteriorating self esteem, worsening ADHD symptoms, and probably the worst one of all, the sudden “fight or flight” feeling while being intimate. Essentially, I would feel like I was being raped in the middle of fooling around with my husband. It was traumatic to say the least, for both of us.

Jack was the kind of therapist that you sometimes questioned how solid his life was. He was a very nice man, don’t get me wrong. But he made huge gaffes in our sessions. When I told him about my son being autistic, he grimaced and asked, “Oh no, is he a screamer?” I honestly almost left after he said that, but I figured, he’s just like everyone else in this small town. So he might still be the best I can do.

Second gaffe came when he kept telling me about his other patients. I am a people-pleaser, so I didn’t say much when he repeatedly brought up other patients, but still, it was off-putting.

Third gaffe, or perhaps, just a bad therapist moment, was when I told him that I was LGBT, and he suddenly found ways to keep bringing up Jesus. I dig Jesus, but the conversation was suspiciously not about spiritual matters. It was definitely not WWJD.

Anyway, after several months of therapy, where I was just starting to understand my own autism/ADHD, I repeatedly tried to get him to talk to me about what I was feeling on that subject. In response, he repeatedly tried to diagnosis me with Borderline Personality Disorder. There is nothing wrong with being BPD, but it just wasn’t my situation.

Here are some of the problems associated with BPD (and why they did not apply to me) …

  • Frantic efforts to avoid real or imagined abandonment by friends and family. (This is similar to Rejection Sensitive Dysphoria, but I never actually thought they’d abandon me.)
  • Unstable personal relationships that alternate between idealization (“I’m so in love!”) and devaluation (“I hate her”). This is also sometimes known as “splitting.” (Not an issue for me.)
  • Distorted and unstable self-image, which affects moods, values, opinions, goals and relationships. (Again, similar to RSD. But BPD can refer to distorted in a “delusions of grandeur” kind of way. Not my problem. )
  • Impulsive behaviors that can have dangerous outcomes, such as excessive spending, unsafe sex, substance abuse or reckless driving. (I have impulsive behavior from my ADHD but no where near this level of harm. I’m in a healthy relationship with no substance abuse and I’m a relatively boring driver.)
  • Self-harming behavior including suicidal threats or attempts. (Any suicidal idealization I had came from medication side effects and sensory over-stimulation, which I tried to make him understand, but he didn’t want to listen.)
  • Periods of intense depressed mood, irritability or anxiety lasting a few hours to a few days. (I was being treated for Bipolar so this always felt a little like lazy diagnostic thought to me. Duh.)
  • Chronic feelings of boredom or emptiness. (I have ADHD, I am not bored. I get depressed but that is different.)
  • Inappropriate, intense or uncontrollable anger—often followed by shame and guilt. (Ahem… Bipolar, RSD.)
  • Dissociative feelings—disconnecting from your thoughts or sense of identity or “out of body” type of feelings—and stress-related paranoid thoughts. Severe cases of stress can also lead to brief psychotic episodes. (This was a problem for me only in the aspects of Autistic burnout. Different animal.)

Now, if you know anything about RSD or autism, you can understand how Jack might have been confused. Especially because of the longstanding psychiatric idea that women are not autistic, and men do not have BPD, which has lead to misdiagnosis all over the place.

My problem with Jack was not that he misdiagnosed me, but that he wouldn’t even listen to my objections to that diagnosis. Then he made the mother all gaffes, that allowed me to leave him without any second thoughts…

He told me all about his former patient that was “just like” me. More and more I agreed with his description, until I finally asked with hope, “Well, what did you do for her? Did she get better?”

His face went white, he gave this very old man clearing of his throat and said, “Well, she told me that she would always remember the time that we shared together, and that made me feel better after she… uh… passed.”

That’s right, folks. His patient killed herself. And he forgot about it right up until I asked about her.

So, even if he were not so incompetent, I would still say that he just didn’t get me.

Before Jack, was Marueen, who you can read about here. I only had two appointments with her a year apart. And neither were helpful. Not only because Maureen didn’t get me but because I wasn’t telling her the truth. I didn’t know it at the time, but I was masking.

Before Marueen, there was Debrah, when I was about twelve years old. She told my mother that I was depressed from the novels I was reading. Yeah. That was over before it started.

So that brings us back to today, where I made the difficult decision to leave the best therapist I have ever had. Why? Did he compare me to his other patients? Did he try to diagnose me with a disorder that I didn’t have? Did he compare me to a tree? (Again, check out Maureen’s story.) Did he completely ignore my autistic diagnosis?

No, he was a great counselor. But he just didn’t know enough about autistic people to help me with my atypical relationships and problems. He was great for emotional regulation and RSD, but when it came to my autistic traits, he dismissed them. Purely from a lack of knowledge on the subject. He fell for all the usual tropes, assuming that I had a lack of empathy, that I don’t understand emotions or that I would be unable to understand facial cues (I do not have this particular problem, some autistic people do, I don’t. Don’t make assumptions.)

STILL, he was the best I’d ever had. But was that “best” good enough to keep seeing him, even though his advice was becoming more and more neurotypical? No. It wasn’t. So I took the chance that I might hurt his feelings and asked for a new counselor on BetterHelp.

Again, it delivered. I am starting with a new therapist, let’s call her Donna. She is LGBT with personal autistic experience (!!!) And I am hopeful, if not confident, that she will get me. And I would have never met her had I not had the strength to stop using Rodger’s services.

So like the title of this post says, therapy is a bit like Russian Roulette. Counselors and therapists are still just people. And people can be both good or bad at their jobs. They’re either the bullet you need to take out your problem, or they’re just an empty chamber. (And the damage from an empty chamber is worse in this scenario, in case my metaphor is mixing you up.)

My point… If the therapy you are experiencing is not right for you, get a new therapist. There is no shame. As always, reader, I implore you … demand help.

Check out any of the internet based therapies out there, but I will always suggest betterhelp.com. They really made a difference in my life.

Also, if you are interested in the fun “finding yourself” journal check it out in Emily McDowell and friends shop. She’s one of my favorites. Like she says in the product description, technically that journal is a lot cheaper than therapy.

Autism Speaks

Okay, so I came here to do a piece on Autism Speaks. But uhhhhgggg…. it just depresses me. Depresses me is actually the wrong word. It turns my stomach into knots. It triggers my conflict anxiety, and then turns it up to 11. So the reality is, I really just don’t want to talk about it.

Anyway, many people have done it better before me, so I will give you my opinion then a list of links and information for you to check it out yourself.

Autism speaks came on the scene in the mid 2000’s around 2005. The diagnostic criteria for children had just been opened to include much more of the spectrum including what was known as Asperger’s syndrome. So there were a lot of parents looking for resources. Autism Speaks came about to fill that resource void.

They are technically a non-for-profit charity but the way they use the money that they raise is often a little suspect to most actual autistic people. They also do not consider the voices of the autistic community when dishing out funds or grants. And for the longest time, perhaps even still, their main focus is a cure. To most autistic people, talk of a cure is insulting.

In my opinion, we don’t want a cure for autism. We want cures for the hundreds of comorbid conditions that often plague autistic people. We would like to be autistic without ADHD, without OCD, without Apraxia, without horrible gastrointestinal issues, without food sensitivities, without immune disorders. The list goes on and on. Now you may say, but you have all those things because of your autism. I don’t think so. Because you don’t have to be autistic to have ADHD. You don’t have to be autistic to have Apraxia. You don’t have to be autistic to have a learning disability. Being autistic might mean that you are more susceptible to these conditions, but we are more susceptible to A LOT of things. Like hyperosmia; do you know who else gets hyperosmia? Pregnant women. Are we looking for a cure for all pregnancy? Are we trying to “END PREGNANCY NOW”? Do we pity the people who have pregnant people in their families? No. No, we don’t.

But Autism Speaks did or said all those things to autistic people, or more in particular, the families of autistic people. They are trying to turn their checkered past around with a more kind and inclusive approach, and I applaud that. But I also share the opinion of Sarah Turner aka Autistic Barbie, she tweeted @autismspeaks when they introduced their new “rainbow puzzle piece” to represent a new era of inclusivity-

How powerful would it be if your organization just admitted ignorance & fault towards the mistakes you made in the past, issued a public apology, and subsequently, truly included autistic individual input moving forward?

Imagine the impact and power of your transparency in allocation of funds, restructuring, rebranding, creating a new inclusive organization and designating leadership to autistic people within it…isn’t it time to set your ego aside and just work together?

-Sarah Turner

Honestly I think it has a lot to do with the damn puzzle piece and identity politics. So many people really grabbed hold of Autism Speaks identity, in a time where all they wanted was to help their children. So the puzzle piece logo became a rallying cry for their community and their children. But their children are grown up now, it’s been over fifteen years, and they don’t like what Autism Speaks has to say about them. (I won’t even get into the extremely insulting media campaigns that portrayed autism as a deadly disease or a serial killer hiding in the bushes. It was shameful.)

But the parents have already internalized the puzzle piece as part of their identity, and they can’t see why #ActuallyAutistic people are getting upset about it. So they start developing ideas like “Autistic privledge” or functioning labels that still portray their children as somehow less than human.

No one is arguing against the fact that some autistic people will need support their entire lives. No one is doubting that some autistic people have serious intellectual disabilities. All we are saying, is we are alive. And we have worth. The majority of us aren’t a burden. And none of us are dying from autism. If anything, we are dying from horrible “cures” like bleach enemas. Or the biggest “cure” of all, familicide. That’s right, disabled people are being murdered by their families because they are “better off dead.”

Now… I am not saying that Autism Speaks wants to murder disabled people. I don’t want that to be what you take away from this post. But they are perpetuating a culture of infantilization and abuse in the guise of good parenting. And I never want to support that. In fact, if Autism Speaks cares so much about the “burdens” autism families face, we really need financial help for medical bills and safe housing for intellectually and physically disabled adults who need more support.

Please, please keep your puzzle pieces, they are sweet and charming. But also, separate your icon from a company that does nothing to support your children. Start seeing your children as people, not emotional burdens, not permanent babies, and most importantly, not victims.

Remember, you don’t have to be “high functioning” to live a good life. You don’t even have to be smart. I’d say being smart often gets in the way of that. You need a good support team, love, respect, and a little bit of space. So if that means that your intellectually disabled adult autistic son lives in an apartment over the garage, or a SAFE community home/school where he is respected and watched out for, or even, his childhood bedroom with a lock on the door that he controls, that is still a successful life.

They don’t have to be a lawyer like my husband, or an advocate like Sarah Turner, but they do need the respect that all human beings deserve.

So next time you hear someone talk about Autism Speaks, you don’t have to get angry, that’s not how you change people’s minds. But you might consider suggesting the Autistic Self Advocacy Network, or any of the other autistic support groups that include autistic collaboration and respect.

Autism Speaks made people aware of Autism. That is good. I will give them credit for that. They have also raised thousands upon thousands of dollars, that’s great. I just would like to see them change. Do like Sarah said and put aside the past and listen to the community they claim to serve. Honor the new diagnostic criteria about women and stop suggesting to “light it up blue.”

(Yes. Blue as in boy. Because only boys “get” autism. WTF.)

And as a disclaimer, I do not check off all the boxes as a perfect autism advocate. I think that certain comorbid conditions of autism are debilitating. And if there was a way to wipe out all those conditions with the elimination of my personality type, I would probably take it. I would do that for my son.

(My son has both Apraxia and Dyspraxia. It is downright painful. I would legit wipe out everyone’s personality type if I could help him speak without the anger and frustration that builds up with his processing issues. Maybe if we were all the same, people would stop being ableist assholes. Probably not.)

I also put my son into a preschool that uses ABA therapy, a controversial, sometimes emotionally harmful, practice. We have our reasons, most of them having to do with the availability of other therapies, insurance coverage as well, and I would be happy to tell everyone about our experience, both the wonderful and the questionable. (It’s 95% wonderful, by the way. Although I think that has more to do with his therapists and this particular school than ABA therapy itself.) So there are no easy answers when it comes to such a complex conversation.

The point is… you can’t “cancel” Autism Speaks without erasing a whole generation of parents who just wanted to help their children. And you can’t give Autism Speaks a pass just because they want to have a “year of kindness.” I believe those that support Autism Speaks should evolve, but I also don’t think they should be regarded as monsters. Wrong and misinformed, but not monsters. And they should be allowed to keep their puzzle piece tattoos because they are darling, and they had to hurt.

It’s a lot to discuss. Hence, the need to bring in the other experts… Here is a list of links to help-

Who Am I?

While being sick in my bed, I don’t have a lot to do but daydream. Sure, I’ve watched some movies (Oh Greta Gerwig, your Little Women makes my heart ache it’s so good.) I’ve listened to a lot of ASMR. Done some writing, of course.

But mostly I’ve slept and daydreamed.

And in all this dreaming I’ve begun to wonder, Who am I?

No, the coronavirus does not also include amnesia now in its list of symptoms. No, just now that I am post Autism diagnosis so late in my life and I am living without a mask for the first time in years…so I’m wondering who I am, for real.

Well, for that, I think I should start with what I was. I was definitely a performer. First in the theatre itself. I spent a lot of years in semi-lead roles and secondary parts. Nothing to sneeze at. Performing throughout high school and the years in college before I dropped out. Then after I dropped out, my mother’s school failed to pass a referendum. So they cut the middle school play due to financial reasons. This didn’t sit well with my mother, so she brought me in as a ringer to direct a show. When I say ringer here, I mean “for free.”

But that decision turned into a program between my mother and I that spanned almost two decades. I wrote and directed several shows, published one with an international publisher and continued to publish the rest on my own. I’ve created online courses on directing, costuming, and set design. My shows have been performed by schools all over the world, and I don’t mind saying, have made many, many children happy.

So, I’ve done things. I was successful despite my difficulties. But I was still not completely myself. Part of that was being queer, but by in large, it was because I knew I was different.

And because I was different, I was also just a little bit lying. That’s why the subtitle to my blog is “honestly.” Because even before my diagnosis, before I knew what I was, I knew that I was tired of hiding who I was. Tired of performing a reflection of what people thought I should be.

That kind of performance, that kind of masking, it tears you apart. You begin to fracture your personality for the consumption of others. Carve away at your soul, just to make sure that you are palatable to everyone. So no one sees the truth. So no one is angry with you, for being yourself. (It’s a lot like, a less evil version of horcruxes, only the person you are murdering is yourself. You do it to protect yourself, but in the end, it destroys you.)

But that kind of brings me to a different, more hopeful thought. Once you reach the realization that you have been masking for a very long time, or in my case, three decades, you start to grieve for the time that you lost. (It’s interesting that parents often grieve an Autism diagnosis, not knowing that without that diagnosis, their child could be grieving a misspent life. Maybe if they knew that it wouldn’t be so hard.) In grieving the lost time, you can go down a really dark hole. I was really starting down that hole when I came upon a post from Autistic Women and Non-Binary Network, it was a quote and a link to a blog from another adult autistic woman.

 “Despite my late discovery of being autistic, I am learning to flick on the switch of possibility and reinvention, instead of obsessing over lost time”

Stimming My Way Forward

Possibility. It was so simple. Now that I was aware and open about who I was, everything seemed possible. I could be who I really wanted to be, an open, honest, person, who helped others by example.

It is literally all I have ever wanted. To help others. It is my calling. More than theatre, more than writing, I want to help. All the children, my students, that I failed to connect with on a deeper level because of my mask. I will devote my life to overcoming that regret.

I will still honor the person that I was, the innocuous nuggets of truth that managed to surface over the years. Like the fact that I am a huge Harry Potter nerd (see horcruxes above) or my love of science fiction and comic book movies. My years teaching in theatre. My love of writing and reading.

But I will also eat more pineapples. And wear more tights. I love tights. I might even perm my hair. Color my hair more! Pink! It’s gonna get wild folks. More than anything, I’m not going to live afraid.

Because this is a rebirth. This is who I am.

Float sinks for me

A different perspective for Inspirational Autism Stories ON “AUTISM AWARENESS WEEK”

Just like millions of other people, my family has the Disney+ streaming service. We use it multiple times a day. We find Nemo, we find Dory, we visit Mickey’s clubhouse an exhaustible amount, and don’t even get me started on the amount of times we are in Riley’s head. But there is one video that I really can’t get behind, no matter how much I want to…

It’s Float.

Float is a father, son story about a little boy who, for whatever reason can float. Not to give the story away, but basically it’s about the dad’s response to his son’s floating. And I’m gonna be harsh here, but he does a real shit job of it for the majority of the short film. He keeps his son locked inside at all times, when he does go outside he puts rocks in his bags to keep him down, and then, at the climax of the film, he screams at his son, “Why can’t you just be normal?!”

“Uh… What.. the… fuck?”

That’s a direct quote from me after watching this movie by the way. “What the fuck?”

Having heard about how inspirational this short film was, I clicked on it one night with my husband and son. And as soon as the credits rolled, I turned to my husband and we both just looked horrified. Not only did we never have any reactions to our son like that, there wasn’t a world where we would ever be tempted to treat him in such a way. This isn’t me being righteously indignant, it’s just the truth.

Now let me back up a bit, and tell you why a lot of people would find that particular film inspirational, and let me first start with this: The Dad in this little story was not a bad guy, not at all. In fact, he’s a real guy. The man who wrote and produced the short film, Bobby Rubio, was taking from his own experience to create what he hoped would be a film about acceptance. AND yes, I think ultimately on some level it is. But mostly I think this still falls into the limiting “awareness” category.

What’s the difference you might ask? “Autism Awareness” is often about alerting neurotypicals to the differences that autistic people experience. Sure, on the surface, that’s good. But it is also much more about pathology, mostly focused on a cure, or a “fix.” Or even worse than that, it’s meant to make you pity autistic people’s parents. Not autistic people, but the families that are “burdened” by autistic children. “Autism Awareness” is about tolerance. And to be tolerated, you must first be an object of irritation, anger, or worse, even hatred. How does that sound to you? Does that feel good? Do you want to be merely tolerated?

Acceptance is a very different thing. And to be fair to “Float,” in the end the father character is very accepting of his son’s ability. Playing happily with him in the park and not giving a single fuck about who gawks. That is acceptance. “Autism Acceptance” is giving autistic people the respect to know their own minds. Acceptance is allowing autistic people to change, despite the limitations that they may deal with in a society that is built around neurotypicals. Acceptance is about pride and celebration.

And perhaps it is because both my husband and I are neurodiverse that we never even thought to treat our son that way. We have never ever been normal. So the heartache we have in the little prince’s more autistic behavior, is only because he will have to live in a world that does not accept autism. We’ve never wanted him to be normal. We’ve only wanted things to be easier for him. (But who’s life is easy anyway, right?)

Sometimes I know that I really need to give neurotypical parents a break, and I honestly do strive to do so. I understand that parents go through a grieving process when they are told that their children are different. But still, no one has died. Only your perception and assumptions about your child have perished. I think all parents should have such a death. The sooner they stop assuming that their child is exactly like them, the better. They are their own people, different or not.

And again, “Float” definitely gets a lot of things right. Like the general disarray that the house is in? Oh man, is that true. The crayon marks on the ceiling? I think we have those and our kid is gravity bound. The way that people will respond to unexpected behavior in the park. Right on target. Fear, anger, and escape.

But that’s human nature isn’t it? Difference is often associated with danger. And until we stop that association we are always going to get those looks from “normal” families and strangers. Until we accept autistic people as another kind of person, and not a problem for parents, we are all going to sink.

Our family on a walk. No one stared by the way.
Even though I put them in matching outfits.

Holly Really, Really Loves John

So, being sick at home, or quarantined at home, is probably putting a lot of marriages to the test. If you are one of these people, skip this post, because I will probably piss you off.

My husband John is pretty much the best person I know. Strike the “pretty much”, he is legit the best person I know. Of course, like any other marriage he does little things that occasionally drive me crazy, but that’s just run of the mill differences. He was raised a Republican, I was raised a Democrat. He likes video games for relaxation, I like books. And honestly, none of those things “drive me crazy” more than they occasionally perplex me.

We met on Match.com, like a lot of other people of our generation. And he got me with alliteration; the phrase was “ham-handed”, and instantly I knew that he was something special. This is one of his proudest achievements. He got me, his wife, with alliteration.

He’s a lawyer that started in computer science, you know, like most lawyers, right? He’s a partner in his own firm. He works incredibly hard to be the big bread winner in our family. (Even though he would be just as willing to stay home and take care of our son.) He is patient, he is kind, he is literally all the things that Corinthians said love should be.

He’s also autistic. If you have read my blog before, that’s probably not a surprise. But it sure is for everyone else.

“You don’t look Autistic,” they say.

Anyone who is autistic knows that is not a compliment. (Just ask Autistic Barbie on Instagram. Smart and gorgeous woman, who also happens to be a fantastic advocate. I’m a big fan.)

John and I both discovered our autism after our son was diagnosed when he was about two years old. And honestly, our son’s autistic traits were so “normal” to us that if it hadn’t been for his Apraxia, I don’t think anyone of us would have ever understood why we were so different from everyone else.

(That is probably the only time I will be grateful for my son’s Apraxia. Apraxia is the reason he is non-verbal, at the moment. That deserves a whole other post though, so look for that one on the horizon.)

No, John and I really came together because we were just so perfect for each other. Little did we know that one of the main reasons we were so perfect for each other is that we had mostly the same disorders. Neither of us are ashamed of this, in fact we find it to be kind of amazing. Two Autistic people with ADHD, OCD, and occasional agoraphobia, unwittingly came together and fell in love. The only thing that I have that he doesn’t is the RSD and the Sensory Processing Issues. Most of the time we say that we are neurodiverse and leave it at that. Still, what are the odds?

It makes for a pretty fantastic marriage most of the time. We both prefer to stay in. We each have our own interests (or obsessions if you want to call it that.) We are both extremely empathetic to our son. We are compassionate of each other’s more difficult moments. And we both know the ironic and exquisite pain of wanting more friends, and fearing social engagements at the exact same time.

It’s true, we occasionally run into the problems of two neurodiverse minds rubbing against each other the wrong way, but we have learned to always trust the intent of the other person, and the validity of all feelings. That doesn’t mean we don’t fight. Of course we fight, we’re human. He’s a lawyer for goodness sake. He’s a professional fighter. (Not like kickboxing or anything, we don’t fight like that. Although I maintain that my old cheerleading high kick could still take out his 6’4″ nose. I’m only 5’3″… so that may be bluster.)

Where was I going with this? Oh yes, I am sick. Just like a huge percentage of the world right now, my body is fighting the Coronavirus. It’s not as dire as the poor people on ventilators, my fever is still very mild. The only worrying symptoms I have are some weakness from the the slight oxygen deprivation, and the horrible pain from inflammation hitting all over my body. Both come and go, so I won’t be rushing to the hospital anytime soon. But that also means, I can’t go grocery shopping. I can’t put our son to bed. I can’t hug and kiss either of my boys.

So it still really, really sucks.

Not just for me, but for my husband too. The grocery store gives him a lot of sensory problems, between the lights, the smells, and the people, it just makes him very uncomfortable. He can white knuckle his way through it, but I’ve always been able to tolerate it just a little bit better than him. He’s working from home even though our son is extra clingy because I can’t hug or kiss him. And he’s dealing with me, constantly making sure that I drink water, especially when I get a little loopy from the thinner air I’m living with.

It’s moments like these that you get really thankful for the people in your life. Especially when they step up to the task as well as my husband has. So yes, this is just a public love letter, friends. A declaration of bragging rights. I am so damn grateful for my beautiful family, even with the troubles we face from time to time.

I wouldn’t have it any other way.

Except the corona… the coronavirus really, really sucks. Stay safe everyone!

Sensory Meltdown

HOW I DEAL WITH LIVING IN A WORLD THAT IS JUST TOO MUCH

Hyperosmia, misophonia, and photophobia… No, photophobia is not being afraid of having your picture taken. That is technically Scopophobia, or the fear of being seen. Like most people that have had problems with their self image in the past, I can understand that one too. But that’s not what this is about.

Hyperosmia, misophonia, and photophobia.. (oh my!) …are respective sensitives to smell, noise, and light. Or in the world of some autistic people, just having a nose, ears, and eyes. These sensitivities can trigger stress, or be the result of stress, whatever makes it happen, it is something that we deal with every day.

So how do I do it? It requires tools, accommodations, and occasionally, trickery, but I do it everyday.

Here’s how…

So I wrote this piece a few weeks or so ago, at the beginning of quarantine. And while everything that I was going to tell you was true.. what I am about to tell you is also true… And it’s happening now…

Hyperosmia, misophonia, and photophobia, collectively, really just mean that you are very sensitive to the world around you. And at times of stress, it can also mean that your senses will turn on you.

What’s more stressful than a global pandemic where millions might die? Apparently, living with my sweet little family.

The little prince is home from his school. He doesn’t understand why his entire routine is just suddenly gone and he is acting up because of it. We’re also trying to potty train, something that is difficult with neurotypical children, let alone autistic children affected by large and unknowable current events.

Typically, I use the time he is at school to clean up, reset my house. Deal with all the mayhem that he inflicted the night before. Find where he hid the can opener this time, pick up all the shirts that he threw on the floor to steal the hangers from- put away all the silverware that he took from the LOCKED drawers around 3 am while we were sleeping.

This may sound like I am a neat freak. I’m really not. I’ve lived most of my life as a messy person. But as I’ve gotten older and my responsibilities have grown larger, my need to control my environment has multiplied exponentially.

So, as you can imagine, with quarantine, I haven’t been able to control my environment. The can opener is lost. All the shirts are either dirty or on the floor, hangers or not. And the silverware… my god, most of the silverware is with the dirty dishes. Reeking in the sink.

Then I also happen to be married to an autistic man, who has trouble with any kind of change to his routine, or his needs. He is not selfish. He just has trouble with this. Like millions of other people, let alone autistic people, he has trouble adjusting. So I can’t ask him to pick up the slack as I might be able to in a typical marriage.

And now…. Now I am sick with the virus. It’s not as deadly a case as it has been for others, but it is extremely painful at times, not to mention isolating.

So as you can imagine, my world and my mind are melting down.

What did I do to stop it?

Well, first I tried having a session with my online counselor that I see through betterhelp.com. I have received so much help from this online modality of therapy. This particular counselor has helped me a lot with the practical side of regulating my emotions. BUT when it comes to autistic traits, he just wasn’t helping. He kept harping on the fact that I needed to be more assertive with my husband. Anyone who is autistic will tell you that someone being more “assertive” with you is not going to be some kind of wake up call. It’s going to be a trigger for more stress. I tried to follow his advice, but it only resulted in more emotional turmoil, for both me and my family. (I want to say something more about therapy here, but that deserves a whole different post. So stay tuned for that.)

Anyway, that didn’t work. So I flipped out. Not at anyone per say, no, I just went to my computer- cried really hard- and then started writing. Stream of consciousness, painful, emotionally volatile stuff that I blamed on my counselor, my husband, my autism, EVERYTHING. I typed so hard that I damaged my keyboard. Then, when I was done, I erased it.

This is the literal definition of catharsis. I had to get those feelings out or I was going to lose it on someone I cared about, most likely my husband, if not myself. And you can lose it on yourself. You can do a lot of damage to yourself.

I watched some ASMR to cool down, my favorite GIBI Affirmation video. And then I got some sleep. This helped.

Then, as I said before, I started to get sick. While I am 99% positive this is COVID-19, my doctor asked me NOT to come in for a test because of the rationing of medical interventions and supplies. He told me it sounded like it was potentially corona and to call immediately if it got worse. This was not great when it comes to my need for rules and certainty, but my enormous want to be helpful i.e. not infect other people, satiated the not knowing. At least enough to follow my doctor’s orders. Orders are close enough to rules to shore up the uncertainty.

But being sick didn’t help my environmental concerns. The dishes and the garbage still smell, the can opener is still missing, and the ice maker is making a horrible, horrible sound.

So, seriously, what do I do now? My environment is only getting worse, so my sensory issues are only getting worse. What do I do?

Part of me had to shut down. The part that can’t handle sounds and smells, that had to shut down a bit. The way I see it, I’m practicing desensitization by letting things go. If it gets too bad, I do use some of my tools and tricks to get through it, like lighting candles or listening to ASMR. But it’s important to try and stretch your abilities from time to time (that’s a tip from Temple Grandin by the way.)

And my husband did have to step in, because when it really matters, he too can overcome his issues to help the ones he loves. It’s hard for him, and he has experienced some burnout from the near constant demands of his wife and our extra clingy kiddo.

But we’re making it through.

Honestly, as soon as I am better, I am going to do my best to reset this house, even under the restraints of quarantine. And I will use every trick at my disposal to get there, until then, I’m letting it go. And getting some rest.

That’s the most important thing I can tell you- just let go. Occasionally, the world is going to be too much and you won’t be able to control it. All you can control is how you respond to it. Use all your accommodations and tricks to mitigate it the best you can…

…then let go.

Neurodivergent Survival Guide

I’m starting a new aspect of Holly Loves John, with the Neurodivergent Survival Guide. This will be a living document that records my tips and lessons on how to survive in the neurotypical world with a neurodivergent mind. Now, this is my neurodivergent mind, or more specifically, an autistic woman, with ADHD, OCD, RSD, Sensory Processing Issues, Anxiety, Bipolar, and Agoraphobia. There are many other aspects of neurodiversity that I have little to no experience with, so they will not be apart of this guide, just an FYI.

This week, I am starting with sensory issues, including Hyperosmia, Misophonia, and Photophobia.

It will be under the Me(ntal Health) menu option from now on as the “ND Survival Guide.”

Check it out! And happy reading!

I weigh…

As you know, I’ve recently started exploring the wonderful world of Instagram. Yes, I’m in love. Not just with the platform, but with several new faces and hashtags that I am following. #effyourbeautystandards is both delicious and nutritious for my mental health. That’s where I found the downright glorious Tess Holiday. (It’s also where I have had to practice my “no flame wars” rule, because damn, people are mean.)

But it’s also where my love of one Jameela Jamil has been forever cemented in my heart.

I did not find Jameela on Instagram, though. No, I first really heard of her, Jameela Jamil, the person, not just a character on “The Good Place”, because people were being so damn shitty to her. Oh, and that hasn’t stopped by the way, just look at what her boyfriend James Blake had to say recently…

Good man, James. Good man.

No, the first time I heard her name it was because the LGBT+ community was outraged that she had been cast on the HBO ballroom show “Legendary.” For those not in the know, ballroom does not refer to the dancing you are picturing right now. This is not dancing with the stars. It’s referring to the ballroom culture started in the 1980’s (check out the documentary Paris is Burning, then you’ll know.) Now this is not my scene so I am not going to say that she was the right person for the job, that’s not what drew me into this particular media splash.

No I came in, when a lot of people basically decided to “cancel” her as a judge on this show because she is not LGBT+… BUT SHE IS… She’s queer. And after being forced to correct a lot of misplaced anger, she decided to come out as queer, even though she shouldn’t have had to do it at such a time. Did this appease the community? NO, they turned on her more. A large portion of them pointing to the fact that she was dating a man, again erasing bisexuals from the “authentically” LGBT+ community.

As a queer woman, madly in love with her cisgender husband, you can bet that this put Jameela on my radar. I decided then and there that I would go to war for this south asian queer goddess, any day. (That’s how you know I love something, my loyalty is unparalleled.)

So to find her I_weigh movement on Instagram, well, my pledge for war in her honor went from a skirmish to a full-body measure of devotion.

The I_weigh movement is about “body neutrality.” Trying to turn the focus from bodies and looks to interior beauty. I know, I know. She’s not the first to do this. But I think that she might be the first to have the tenacity, and the platform, to really take it somewhere.

She has a new podcast by the same name coming out on April 3rd and you better believe that I will be listening.

Just like Jameela, I had some health problems that made me gain A LOT of weight. (I also fell in love with a man who introduced me to the idea of takeout. So it wasn’t all side effects.) Then like most women I had a tough time with yo-yo dieting. I lost weight when I worked for Jenny Craig but then gained it back when I left to start writing full time. I lost weight when I started protein and LCHF diets, but then gained it back after emotional meltdowns dropped my manic ass right off the wagon. Around the same time I had a baby, and well, hormones + wrong medication + medical emergencies + carbs = big FAT mental breakdown. (You can read more about it in my post about my chronic illnesses.) I’m losing steadily again now that I have finally found the right medication, but it’s a journey for sure.

So in the spirit of I_weigh, I want to share some images of myself that I would normally not want the world to see. These particular images were taken when my body was at it’s most endomorphic, or you know… fat. (I’ve lost some weight but I’m actually not that far off from these pics, either. So these are not “before” pictures.) Like you will see on the I_weigh Instagram page, I’ve superimposed some of my more important attributes.

Well, I’ll let them speak for themselves.

Like I said, they speak for themselves.

Sick While Anxious

DEALING WITH TWO ILLNESSES AT ONCE

In the interest of not burying the lead, I believe that I have COVID-19. I say believe because getting tested is not something I am interested in. My symptoms are still relatively mild; I have a big boot of pressure on my chest, a dry cough, and a mild fever. It’s painful, but I can still get air. So I have no interest in leaving the house to endanger vulnerable people just to get a cotton swab shoved into my brain cavity.

But it’s got me thinking about what it’s like to be physically sick when you have an invisible illness at the same time. You see, whenever I get ill, that RSD inner critic starts to eat at me. It calls me a hypochondriac, a drama queen, it savagely whispers, “No one will believe you. No one will care.”

This is, of course, because I spend the majority of my time trying to convince others about those differences that I live with- those “illnesses” that require some occasional accommodation, i.e. ADHD, agoraphobia, autism, OCD, etc.

Now, you might say, but COVID-19 isn’t invisible. You are coughing, you have a fever. You look like shit. (Thanks for that last one.) And still I find myself on my phone, texting my sister about what else it could be. And then the obvious, irritating, always on the edge of my tongue question- Is this just anxiety?

It should be an honest and innocuous question, and it would be, if it weren’t for the ungodly amount of real life illnesses and complications that I have had that were blamed on my anxiety. And I know I am not the only woman to have this problem. Let’s get real. Female hysteria was a “legitimate diagnosis” for a very, very long time. And not that long ago, unfortunately. Ask me about Rosemary Kennedy’s lobotomy if you want a real medical horror story. Or do yourself a favor and read all about it.

TRIGGER WARNING: The article I’ve linked to about Rosemary Kennedy discusses an extreme form of ableism, medical assault during her mother’s labor, medical malpractice, and special needs abuse- abuse, in general. Even if you aren’t sensitive, it will effect you. If you have trauma in any of these areas, you might want to research a different source on Rosemary’s story.

A bright, beautiful woman failed by the medical profession from the time of her birth to her death.

Leaving the gender issue behind, people with diagnosed mental health conditions, including autism, are also being under-treated when it comes to physical health problems. (Judging from the information available about Rosemary Kennedy I think she was most likely autistic, if not intellectually disabled from her traumatic birth. So she had two “conditions” going against her.) In my life alone- where I was mostly only recognized as “anxious while female”- gallstones, pancreatitis, allergic reactions, dermatographia, and chronic infections were all vaguely blamed on my “stress.”

In one stunning moment at the ER, someone had the gall to blame my physical symptoms on my son’s autism diagnosis. I’m a very, very polite/timid person, mostly because of my RSD and anxiety, but I believe my direct quote was, “Are you shitting me?”

Maybe I just said that with my eyes. I’m not entirely sure. I was in a lot of pain.

The point is… and this is pretty much my continual, all-consuming, message… is this:

Demand help. If you are sick, take up the space that is necessary to protect yourself and others. Even if someone wants to downplay your symptoms, it’s on you to not only get help for yourself, but in this time of contagion, it’s on you to protect others. (Not just medical help either. Demand it from your family, your friends, your roommate, whomever. I’m not going to the doctor yet but my husband and I took the time to recognize my symptoms and make a plan if it gets worse.) Anxiety may lie to you and call you dramatic, but a virus will still infect your loved ones, whether they are willing to believe you or not.

A virus does not need outside confirmation to be legitimate, it just is. So in this case, just this one time, be like corona. Rear your ugly head (I told you I look like shit) and demand to be noticed.

It’s the only way we can live.

For interesting information on the effects of COVID-19, check out this New York Times article: What Does Coronavirus Do the the Body?

ASMR and Autism

As some of you may know two very pivotal things happened in my life, I was diagnosed with autism at the age of thirty five AND (this one most of you won’t know) I also discovered ASMR. Don’t know what ASMR is? Oh man, you’re gonna love it. Or not. Me? It’s one of the best tools I have in my mental health toolkit.

Continue reading “ASMR and Autism” →

Agoraphobia, COVID-19, and the Zombie Apocalypse

Like you, I have been watching what is happening to the world from the view window that is my computer screen. And I will admit, it’s making me a bit extra. One facebook thread from a man in the Chicago area made me very worried for all those infected with the virus. (It reminded me a lot of my allergic reaction to macrobid antibiotics.) And an instagram post from a pregnant woman made me feel so compassionate for those experiencing huge life changing experiences at the same time as a global pandemic. And the rationing of medical treatment in Italy… well, let’s just say, that broke my heart.

Last year, when my former therapist was diagnosing me with a plethora of new disorders (I sometimes question these diagnoses because they all seem to be just indicators of my autism, but nonetheless) he also diagnosed me with agoraphobia. I think it was my panic attacks while driving on bridges that was the deciding factor for him. That and perhaps my anxiety in stores? Or taking busses? Or the post office? Oh wow, I just checked out a layman’s definition of agoraphobia- it says, “you fear an actual or anticipated situation, such as using public transportation, being in open or enclosed spaces, standing in line, or being in a crowd.” Well, then. My apologies to Jack. That’s right on target.

So, I have agoraphobia. Which means on any given day, the world outside of my house has always felt incredibly dangerous. Now that it potentially is dangerous, that agoraphobia has gone into overdrive just a bit.

So how do I deal with that?

Continue reading “Agoraphobia, COVID-19, and the Zombie Apocalypse” →