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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14 Comments

  • Reply
    Sas
    May 23, 2018 at 1:42 PM

    Hi Lauren,

    my wife is currently in the process of being officially diagnosed and I can see a lot of their behavior and thoughts in your post. They also told me they feel like acting a lot more autistic now than before considering that they could be on the spectrum and thoughts like “maybe I am only making this up” are coming quite often, too. They also have huge problems with sensory issues (like lights and sounds), we own an a big army of stim/fidget toys, I even recognize a few of the books on the last picture 🙂

    I am really happy for your that you got your diagnosis and have the strength to accept and respect your own needs and stand up for them. As far as I can see (from our experience) this is one of the keys to get through life on a daily basis.

    Wishing you all the best
    Sas

    • Reply
      Lauren
      May 31, 2018 at 12:04 PM

      Hi Sas! I’m glad your wife is able to get assessed, it’s honestly so relieving to finally have a diagnosis and get the care you need. And they’re lucky to have you, you seem very supportive! 🙂

      • Reply
        Sas
        May 31, 2018 at 8:39 PM

        At the moment they are really uncertain if they’ll really get a diagnosis. They are often convinced that they are only faking it and aren’t really autistic at all. But I think that’s a normal thought, especially since their therapist doesn’t communicate anything they, she is just listening and assessing everything. I really hope that everything will work out – we have only two more appointments left.

        And, yes, of course I support them! We are married and what kind of wife would I be if I wouldn’t?! 😉

        • Reply
          Lauren Hannah
          June 3, 2018 at 10:34 AM

          I completely understand how your wife must be feeling! My assessment process was very stressful as the therapist, like you mentioned, wasn’t communicating any of her observations with me. I was stressing out, thinking she must think, “This girl is not autistic at all! What a faker!”, meanwhile she was actually thinking, “Wow, I was wrong, this girl is autistic as hell!” She had the best poker face.

          If your wife is truly certain that they’re autistic, and they don’t get the diagnosis from this assessment, a second opinion might be an option. It’s a lot harder for anyone but white men to get their diagnosis, because we don’t fit the stereotype. It’s important to get assessed by someone who knows their stuff! Maybe that will calm your nerves. 🙂

          I hope everything will work out for them, the best of luck!!

          • Sas
            June 4, 2018 at 8:35 PM

            I really hope that “our” therapist is the same way. I don’t know what will happen if my wife won’t get their diagnosis. They are so much counting on it that it would really throw them if the therapist will say “no, you are not autistic at all”.

            A second opinion would be a good thing but unfortunately it’s really hard to find specialized therapists here in Germany. Actually there are only two possibilities in and around Hamburg where we live: the doc we are seeing right now and one hospital with an appropriate department. A department with a waiting list that is so long that you have to wait two to three years for a first appointment… and the diagnosis takes another year there, too. So that’s not really an option.

            But I am still hopeful that everything will work out with the current therapist. The last appointment will be next Monday… so then we will know what it’s gonna be.

            Thanks for your kind words ♥

  • Reply
    Alexander Ingham
    May 29, 2018 at 5:04 PM

    Firstly I wanted to say get article, a very interesting read. Sorry to hear you had a tough journey to begin with but glad with understand your life is improving. I however need to address something in your terminology; Autism is not a disability, you are not disabled. You’re brain is just wired a bit differently the the average populate, please don’t consider your limited by you’re sensory issues or your social mannerisms, there is really nothing wrong with been a bit different. The average populous aren’t exactly perfect.

    • Reply
      Lauren Hannah
      June 3, 2018 at 10:30 AM

      Hi Alexander,

      Thanks for your comment. However, next time, please refrain from telling (disabled) people how they can or cannot identify. It is not your place, /especially/ when you don’t know that person.

      Not all autistic people are disabled, as I wrote in the post, but I am. Autism is a spectrum, and every autistic person experiences their traits and ‘symptoms’ differently. You can’t tell how disabled a person is by looking at their stuff on the internet.

      “According to the Americans with Disabilities Act, an individual with a disability is a person who has a physical or mental impairment that substantially limits one or more major life activities.”

      My autistic traits and symptoms, as well as co-morbid conditions, greatly limit what I am able to do in life. I may be able to express myself in writing, but I am unable to have a job (regular or supported), go to school, or do any of the things my peers are able to do. I have to live off government ‘benefits’. I have carers that help me with daily tasks and medical stuff. I am awaiting my autism service dog. And this is just the stuff I’m sharing with the world. There’s a lot more that I feel is too private to share. I need a lot of accomodations and support to be able to /look like/ I’m managing.

      Also, I have a feeling you don’t know much about autism since the things you mentioned are sensory issues and social mannerisms. As I said, there’s a spectrum, and it’s huge. Autism is a lot more than those two things. I suggest you read up on it before making comments.

      Thanks.

  • Reply
    ana valecillos
    June 17, 2018 at 5:34 AM

    Hello Laurent
    I’m from Venezuela, I do not speak English very well but I wanted to tell you something

    I knew your project and your blog a few years ago, it seemed like a project with potential and I was very excited to start documenting my life. But for many reasons I did not, the years passed and I never understood the true objective of the project until a month ago.

    A month ago, I was diagnosed with bipolar disorder, I’m still adapting. I am in the phase where my depression is stronger and increasingly away from my friends, family, and my passion is the cinema, what I do.

    But as a result of all this, I was thinking that you are a very strong person and today, you inspire me to document my life and this process that I am living.

    Thank you!
    you are beautiful and strong, and healthy.

    • Reply
      Lauren
      July 5, 2018 at 4:42 PM

      Hi Ana,

      Thanks so much for your kind comment! I’m glad you got clarity with your diagnosis, I hope you’ll learn to manage it better soon! For me, my autism diagnosis has changed so much in the way I do things. I’m not quite ‘happy’ yet, but I’m starting to feel hopeful again that one day, I’ll’ get it together’.
      Have you finished a video yet? I hope so! It’s such a great feeling when you’ve created something all on your own!

  • Reply
    Angela
    July 19, 2018 at 12:22 PM

    Hi Lauren, Good to hear you are adapting your life to your diagnosis, and stop to compromise on all levels. I have been diagnosed 1 year ago, and also stopped compromising and started to do what is best for me. This really helps me dealing with the sensory overload, and enables me to get back to work again (I did not work for 1 year due to heavy overload). I have also bought the right tools to help me with the sensory overload. I am so happy to use items that can help me! And to know a bit what to do, to reduce sensory overload. I hope you find a way to function more properly/with less overload. Sterkte!

    • Reply
      Lauren
      July 30, 2018 at 12:39 PM

      Hi Angela! Thanks for commenting.
      I’m happy you, too, managed to change your life to fit your needs. I’m discovering new coping mechanisms every day, so I’m slowly doing better!
      Did you know that heavy sensory overload for a long time can mean you have what we call on the internet ‘autistic burn-out’? Go look it up, it might be relatable for you. 🙂

  • Reply
    Jan
    August 17, 2018 at 2:41 PM

    Although I’m not autistic (at least officially), I can very much relate to a lot of things in this post. I’ve been struggling with mental health for quite a while and upon getting a diagnosis (or a bunch of them, really) I definitely felt burnt out and acted even “weirder” than usually. I also had a very similar experience in NPI, sitting at the table with two psychiatrists and thinking AM I JUST FAKING THIS WHY AM I EVEN HERE LEAVE ME ALONE.

    Eventually I thought, what if everything I thought I was… was just a disorder? But I realized we are more complex than that; if I were able to function on a daily basis I wouldn’t seek help in the first place. Currently I’m trying to find techniques and tools that would enable me to function, while taking sertraline and waiting for the proposed therapy. (Ah, the waiting lists!)

    It seems that no matter the diagnosis, many people go through similar stages of their journey.

    On that note, hope yours is going well: I’m always looking forward to reading your blog.

    • Reply
      Lauren
      August 18, 2018 at 9:37 PM

      The mental health world is unfortunately pretty similar for everyone. It’s a lot of waiting lists and very little therapy. 🙁

      • Reply
        Jan
        August 18, 2018 at 10:05 PM

        I got my first round of CBT really fast. I guess it does help a lot if people. Sadly. I’m not a lot of people. And I don’t speak Dutch which makes the waiting times even longer. :-/ But I found that in my case medications help enough for me to be able to come up with some tools myself.

        Hang in there!

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