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Autism

My One Year Autism Diagnosis Anniversary

Today, it has been one year since I got my diagnosis of Autism Spectrum Disorder (ASD) at age 21. Before I sought a diagnosis, I had already known for a few months that I was indeed autistic, but I needed the official paperwork to get the care I require. Since then, a lot has changed in my life.

The research process

I had to fight hard for my diagnosis. One year ago, I had just started at a treatment center for personality disorders when it felt like something was missing. I couldn’t relate to any of the people in my group, nor did my supposed personality disorders (avoidant and obsessive-compulsive) feel like they fit me completely.

When I brought this up in individual therapy, my therapist seemed wary at first. I then opened up my backpack and took out a pile of books about autism, full of sticky tabs and highlighted passages. “I read these books and it seems too coincidental to not be true. I would like a second opinion autism assessment, please.”

The good news: the therapist was able to do my assessment in the next few weeks. The bad news: as someone specialized in personality disorders only, she didn’t know shit about autism. I basically had to do a Powerpoint presentation ‘convincing’ her I was autistic.
The fact that my assessment happened this way made me doubt myself for a while. Was I really autistic or was I just copying behaviors I’d read about in these books and blogs? Did I manipulate my therapist into diagnosing me? Was I just looking for a way to get better care?
Luckily, my current (autism-specialized) therapists and carers have reassured me that I am very much autistic, and that this insecurity is common amongst late-diagnosed autistic adults.

I wish I had better documented what it was like to first learn about autism, and when I suspected I might be autistic. All I remember is that before I started researching autism, I didn’t know anything about it. If someone had asked me, “What do you know about autism?” My answer would’ve been, “Absolutely nothing.” I guess I knew it was some sort of disorder, but I had no thoughts or opinions about it. Autism didn’t exist to me.
That weirds me out a little bit. Autism is such an integral part of who I am, and I didn’t even know what it was until age 21. I always knew I was different, I knew I struggled more than many of my peers, but the adults always just said: “Lauren is different, and that is fine.”

After I first started suspecting I was autistic, I noticed I was starting to… act a lot more autistic. This made me feel like I was exaggerating or faking it, until I came across blog posts written by late-diagnosed autistic adults. It’s very normal to suddenly ‘act very autistic’ after finding out — it’s only logical if you think about it. You get confirmation that you are in fact different — something you have suspected for years — and you can finally take off the neurotypical mask and display your natural autistic behavior. It sure saves a lot of mental energy.

One year after diagnosis

In the year since my diagnosis, I have been focusing on figuring out what being autistic means for me, and how I can set up my life in a way that works for me. I have to accept that my autism disables me, and that I need accommodations. (Note: Not all autistic people are disabled by their autism, I just happen to be.)

Before, I forced myself to go to school because my peers seemed to have no problem with that, so neither should I. Now I know my autism affects everything from my social skills to my senses to my ability to concentrate — all things that could potentially be a problem in a school setting. With the knowledge I now have about autism, I can look for different ways to learn. For example, I know that I don’t hold information well if I’m in a group, or if there is too much noise, light, or visual clutter around me. I learn better when I try things out with my hands, and if I have someone to ask questions when I start to panic. I need to be taught by someone with a lot of patience and creativity.

Before, I forced myself to shake people’s hands and look them in the eye because that’s the ‘normal’ thing to do. These things make me highly uncomfortable, and I am done with making myself feel like shit for the sake of other people. Now I can tell them that I’m autistic and I prefer waving (for example), and they’ll accept that much more quickly than when I just say I don’t want to shake their hand. It comes across as rude, and that’s the last thing I want people to think I am.

I am learning how to manage my energy levels and sensory input. Before, I thought I was just lazy, overreacting, and going deaf. Now I know it’s part of my neurology, I can’t help it, and I need to find ways to either avoid situations that overstimulate me, or learn techniques to not be affected by them as strongly. Before, I would not have invested in noise-cancelling headphones, prescription sunglasses, or fidget ‘toys’. Now I accept that these are tools I need to manage my disability, just as other disabled people might need a cane, a wheelchair, or a hearing aid. I’m excited to look more into weighted blankets, service dog tasks, communication necklaces, and earplugs.

Before, some people around me blamed me for the fact that I had been in therapy for years but was still as mentally unstable as ever. They thought I wasn’t trying hard enough, or didn’t want to be helped. Now I can tell them that it wasn’t my fault, the doctors were just working with a wrong diagnosis.
I haven’t been suicidal nearly as often as before, because I can (learn to) accept myself now. My depression, anxiety, and eating disorder all stem from my autism, and they will most likely never go away. Regular therapies for these co-morbid conditions will not work unless they keep my autism in mind, as has been made obvious by my years of useless therapy. I will have to do a lot of experimenting in therapy to figure out what coping mechanisms work for me, with the help of people who have experience with autism and know where my difficulties may lie.

I’m still in the middle of the acceptance process. It comes with ups and downs. I still have moments when I wish I was neurotypical, when I wish things could just be easy for once. But if someone offered me a pill that made me neurotypical, I would not take it. Without autism, I would be a completely different person, and I’m happy with who I am.

I’m slowly working my way through the autism books, and who knows, maybe I’ll get to help other autistic people someday.

Resources

These resources helped me a lot when I was figuring it all out. If you suspect you might be autistic, or if you want to learn more about autism, these are all great things to check out:

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Autism Mental Health

Learning to be Okay With Antidepressants

I’ve slowly been lowering the dosage of my antidepressants for over a year now because I no longer wanted to be dependent on medication. I no longer wanted the struggle of making sure I took the right brand of apple juice with me to wherever I had dinner so I could mix the 20 drops of escitalopram with the strong taste of Appelsientje. I no longer wanted to have to take it late in the evening — when my IBS is at its worst — because I forgot to take it during dinner, when I’m supposed to.
But most of all, I wanted to see whether after 4 years of taking this same antidepressant it actually made a difference.

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Autism Mental Health

My Eating Disorder

I have an eating disorder.

No, it’s not anorexia, or bulimia, or binge eating disorder. You’ve probably never heard of it. It’s called avoidant/restrictive food intake disorder. ARFID for short. Also known as Selective Eating Disorder. It was first recognized in the DSM-5, the most recent edition, which came out in 2013.

ARFID makes me unwillingly restrict the types of food I can eat, based on the food’s appearance, smell, taste, texture, brand, presentation, or a past negative experience with that particular food. You could say I’m ‘a picky eater’. You could also think of it as a food phobia. It has nothing to do with body image and everything to do with anxiety and sensory sensitivity.

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Autism Mental Health Service Dog

Service Dog Update

A simplified version of this post was originally posted on Service Dog Nugget on November 12th, 2017.

As most of you know, I’ve been working on getting a service dog. Unfortunately my first attempt didn’t exactly go as I’d expected & hoped…

You may have already noticed a change: I stopped talking about training, I temporarily closed Nugget’s blog, and I included an emotional montage in my March + April + May 2017 Document Your Life video. I didn’t want to keep quiet, but I needed time to process things.

The Nugget you know from photos & videos has been rejected as a service dog and no longer belongs to me. Some dogs just aren’t fit to be service dogs. It was extremely difficult for me to let her go, but I’m finally at the point that I can live with it and focus on the future again.

In the meantime, I’ve gotten the diagnosis Autism Spectrum Disorder, which has luckily opened a lot of doors for me. I now have an autism coach who helps me with a lot of things I struggle with. I’m on a waiting list at an autism center for therapy.
Autism can’t be cured but there is a lot I can still learn, like learning to deal with sensory overload and meltdowns.

I started looking for a service dog organization specializing in autism service dogs, so I know for sure that they can take into account the difficulties of autism. I am now in contact with an organization to see if it’s possible to start working with them.

Your donations are safe & sound on Nugget’s bank account and will be spent only on the purpose you donated for: a dog and my mental health.

Thank you,

Lauren

Autism Books

Book Review: The Reason I Jump

This review was originally posted on my Tumblr blog in September 2017.

Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one, at last, have a way to break through to the curious, subtle, and complex life within. 

Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. Questions such as: “Why do people with autism talk so loudly and weirdly?” “Why do you line up your toy cars and blocks?” “Why don’t you make eye contact when you’re talking?” and “What’s the reason you jump?” (Naoki’s answer: “When I’m jumping, it’s as if my feelings are going upward to the sky.”) With disarming honesty and a generous heart, Naoki shares his unique point of view on not only autism but life itself. His insights—into the mystery of words, the wonders of laughter, and the elusiveness of memory—are so startling, so strange, and so powerful that you will never look at the world the same way again.

Oh, dear. I knew that when I started reading about autism, I was going to eventually find something horrific. I just wasn’t expecting it to be this one.

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