Autism

I’m autistic, yo!

~ gypsy116toast2001 ~ 3 Comments

I recently finished reading The Autistic Survival Guide to Therapy by Steph Jones.

Man, reading this book was like reading about my life. Like, hey Steph, are you sure you weren’t a fly on the wall in like all of my therapy sessions, with all of my previous therapists? Memory after memory kept coming back. I wish that I could say that they were good ones, but….

Unfortunately, they were more along the lines of that time my well meaning therapist would stop interacting with me in conversation until I made eye contact. Her assumption being that my lack of eye contact was shame based. Nope, I cannot find words, verbalize language, when I’m doing something other than speaking. That definitely includes trying to make eye contact. Or how two separate therapists restricted my use of the phrase “I don’t know”. Again, this was assumed to be shame based or a form of avoidance. Nope, I literally did not know… Their questions too vague and open ended. I need specificity. Come on now, I’m autistic, yo!

It brought back all of the ways that therapy had failed me. All of the ways that I thought that I had failed at therapy. After more than a decade of failed attempts, with at least 6 separate therapists, I assumed that I was not meant for therapy. That there was something so wrong with me that no matter how hard I tried, I was destined to fail.

Recently, I did decide to try again. I’ve been back in therapy for probably getting close to a year. The reason being that my naturopath recommended EMDR. If I was going to go all in on this healing physically thing, I needed to give it a shot. That along with this fear that I had. As much as I wanted to heal, who would I be on the other side? So much of my identity is tied up in being sick. Who am I? Did I ever know?

Enter autism. My missing piece. I don’t think I want to get into how I discovered that I am autistic in this post, it’s going to be long enough already. I’ll save that story for another day, but here’s what’s important to know right now. Even though I’ve known for almost a year that I am autistic, it’s been a struggle to accept that (again, reasons for that, another day, another post).

I’ve spent more time then I care to recount going back and forth in my head over the validity of the idea of my son and I being autistic. At this point, I no longer question it. I am autistic. So is my son.

While I am on a waiting list for a professional assessment right now, in the mean time, I am seeing a therapist who is also autistic. They have confirmed their belief that I am autistic. This along with all of the research I’ve been doing has been extremely validating. Honestly though, I didn’t get to full acceptance until reading this book. That is how spot on it was regarding my experiences with therapy. It highlighted so much of my life that I was finally able to say, yes, without a doubt, I am autistic.

Here’s the thing though… I already knew… I always knew. I just didn’t know what it was that I knew. I can’t count the times that I’ve tried to explain it to someone… “Yes, I struggle with anxiety/social phobia/depression… But… There is something else”. I’ve said that so many times it makes my head spin thinking about it. I didn’t know what that something else was but I assumed it was the thing that was broken in me. That if I could figure that out and fix it, then I would be able to function like everyone else. Then I would be healed.

Had I understood that it wasn’t something that needed to be fixed. In fact, it’s not something that can be fixed, but instead my neurology and there’s nothing wrong with that. There is nothing wrong with me. I may have been able to save a lot of pain. For myself and those around me.

If I had gotten a diagnosis as a child maybe I wouldn’t have used an eating disorder to feel some kind of control over my life. Maybe I wouldn’t have turned to drugs and alcohol to as a cover for my extreme social anxiety. Maybe the social anxiety would never have gotten so bad, had I known there was nothing wrong with my way communicating and that I didn’t need to change it in order to be enough. Maybe I wouldn’t have pushed myself to the point of burnout and self harm and suicide attempt or multiple daily meltdowns, had I known.

Maybe, maybe not but… I whole heartedly believe that had I known that my way of being in the world was not wrong, only different, I could have found a way to accept myself. If I understood that I am not neurotypical and there was no amount of healing that would change that, I could have found a way to live a life that took my limitations into account and focused on my strengths. Perhaps I could have thrived instead of fallen so ill.

Education about autism and it’s myriad presentations is important. Diagnosis is important. Listening to autistic people and their experiences is so important. As a society, we are failing so many people like myself, people who fall though the cracks. Keeping this conversation going and sharing our stories is important. I invite you to share yours, as well.

Can’t, not won’t

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PDA (Pathological Demand Avoidance) mom rant incoming…

When my son and I wake up each morning, we spend some time in bed, cuddling and talking, before we get up to start the day. This morning, I mentioned that today was going to be cooler. My son’s immediate response, “no, it isn’t”. I started to explain a bit but was again hit with immediate denial and a bit of emotion.

“Ok, baby. I thought it was but I guess I was wrong.”

Period. End of conversation.

We go upstairs and my mom mentions the weather.

“It isn’t cold” Anger. Panic.

Grandma proceeds to push.

“Alright Mom, drop it.”

She knows he is PDA. She understands what this means. She continues to push. She needs to be right. It is in fact cool outside.

I snap and yell at her.

Why are we arguing with a four year old, period. A four year old with a nervous system disability….

PDA isn’t easy for caregivers but… It’s much harder for the child experiencing it. Every choice we make as caregivers either activates his nervous system or accommodates it, helps him to regulate. He doesn’t get a choice. He is just constantly in fight or flight.

There are decisions that are difficult to make. When and how often to push for him to take a bath, change his clothes, try a new food… But this… This was not one of them.

It is cool outside. I know this. My mom knows this. Accommodating a four year old with a nervous system disability by stating they opposite? Not a big deal.

I really hate living with other people.

Traumatic Therapy

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I sent this email to a former therapist of mine earlier…

“Hello, 

I know it’s been some time since I was in therapy with you but I’m feeling  the need to share with you a couple of recent revelations that have taken place in my life. I feel that knowing these things prior to engaging in therapy would have been helpful, and I wanted to share on the chance that they could possibly be helpful if you encounter similar clients in the future.

In the past couple of years, I’ve come to discover that my chronic illness was in part caused by chronic exposure to toxic mold. I’ve been diagnosed with mast cell activation syndrome. You had insinuated time and again that if I did more, I would be able to do more. I now have a four year old son. Raising my son has forced me to do a lot more and I became more and more unwell, the more that I had to do, until I ended up in the hospital. Without the mold piece I was never going to be able to progress further with my health. I’ve been out of the mold for about a year and a half and I am just now seeing real improvement. I’m able to eat regularly (not every few hours and through the night) and am beginning to tolerate heat a bit more. 

The other thing, I’ve recently been diagnosed with ASD. After realizing that my son was displaying some autistic traits, I did a lot of research and realized that it was likely that myself and many members of my family are autistic, prompting me to seek assessment. I don’t have a lot to say about this other than that I can now see how a lot of issues I experienced in therapy with you were due to my being undiagnosed autistic. It may benefit you(and most clinicians) to do a little research in order to gain a better understanding of autism and the myriad ways it can present. 

Thanks for you time,”

This therapist was incredibly helpful when I was working towards leaving my then husband. After that, not so much. Therapy with this therapist actually became harmful to me in many ways. This is just a reminder to anyone, if something doesn’t feel right to you in therapy, listen to yourself. You know you best. This is especially important, I think, for autistic people. If you have a non autistic therapist and they’re trying to treat you the way they would someone who is neurotypical, it very well may do you more harm than good. Look out for yourself. You matter.

Judgment Day

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I feel…. Fuck, I don’t know what I feel but it isn’t good.

I spent the day at my sister’s. A cousin of mine was going to be there with her children. The youngest two are near my son’s age. The older being six months older than my son and the younger a year and a half younger. The kids went downstairs to play, my son included, while the adults stayed upstairs. From the sound of things the other kids behavior wasn’t the kindest. They were hitting my son with balls, he did not like it.

My child prefers the company of adults and older children. This, I’m sure is at least in part due to it being what he’s used to. He was born right before the world shut down. He didn’t have any exposure to anyone outside of my family (me, his dad, my parents, sister and nieces) for about the first year and a half of his life. After that, his exposure has been limited. Illness doesn’t lend itself well to a lot of socialization.

His encounters with children his age have been few and he’s mostly either ignored the other children in favor of the adults in the situation or stayed mute while following the other child and letting them give him instruction.

I know that this is in part because I haven’t provided him with many opportunities to engage with children his age. I also know that it’s in part autism.

I wasn’t ever truly bullied at school growing up. I mostly stayed out of way, hidden. There were a couple of incidences with girls who were in my friend group (aka the other friends of my only actual friend) where they weren’t very nice but mostly behind my back. They just didn’t like me. I was weird. This was echoed in the time spent with my mom’s side of the family. I was quiet. I was awkward. I was the weird cousin and I wasn’t treated too kindly.

I’ve read enough experiences of other autistic people to know that this is how childhood goes for many of us. We’re treated unkindly at best, severely bullied at worst. It doesn’t matter what we do, mask, hide or actually be ourselves, other children see us as different… Not the same…weird.

This is the part where I don’t know how I feel, or I’m feeling a confusing mixed up jumble of things. If I had provided my son with more opportunities to socialize with children his age, would he be less awkward with them now? Would I even want him to be? I don’t want him to be anything other than his weird and wonderful self but… I also don’t want him to suffer unduly.

I don’t know. Discovering that I am autistic has helped me to realize many, many things about myself and my life. One of the most important being that a lot of the things that I like most about myself are because I’m autistic. I’ve spent so much time mutilating my sense of self, attempting to cut those parts of myself off in order to make myself more palatable to others. There’s nothing wrong with the way I was to begin with and I wish I had known that. There’s nothing wrong with my son. I wonder if the problem lies more in the way other children are socialized than the way my son has been…My son was anxious but he made his best attempt to join in and he got the weird kid treatment. Maybe we all need to look at the judgements we’re making and try our best not pass them down to our kids and talk to them about the unfair judgements being made around them in our society.

Undiagnosis

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If you look up the typical signs of autism in a toddler, my son doesn’t really fit the bill. He’s has had no language delays. No intellectual dysfunction. He makes eye contact with no problem, uses his imagination to tell me creative stories and is at least somewhat social. He’s always responded to his name, smiled when you smile at him… Fuck, he doesn’t even toe walk…

What he does do is line up his toys, stack them up, organize, reorganize..He is sensory seeking, rolling and bouncing and rocking and hitting himself into and onto my body, the couch, the walls. He’s eaten the same thing for dinner for the past year and half or so. He went though a period where we had to be very careful in what textures he ate, how fast he ate, if he chewed well enough… Or he would gag and vomit. He runs and hand flaps whilst pooping. He hand flaps and makes other happy gestures when he’s excited. He “puts water in nose, eyes, ears”… Finger to mouth, finger to nose. Finger to mouth, finger to eye. Finger to mouth, finger to ear. Over and over.

The most telling sign of all, I’m my opinion, is his extreme demand avoidance. His equalizing behavior when stressed out. How contrary he can be…

Despite all of these things, most people (even autism “experts”) see him as neurotypical…. Listen to how well he speaks, oh and he’s so sweet and creative and social and and and…

I am fairly certain that I am undiagnosed autistic. I went under the radar my whole life and the consequences have been dire. I’m not willing to let that happen to me child.

Finding appropriate and affordable help should not be so damn difficult.