Neurodivergent

Autism, Identity, Neurodiversity

ananswerYou may or may not remember that I made a passing mention, in a This & That post last fall, of reading and relating to a post on the blog Musings of an Aspie. What I didn’t mention after that was that I continued to read Musings of an Aspie, and I continued to see myself in Cynthia Kim’s blog, and it didn’t take me long to begin to really wonder, was I on the autistic spectrum after all?

Meanwhile, I was struggling to understand why I was feeling the way I was. Tired all the time, flaring up with a hot temper at the littlest things. It didn’t make sense to me that I was so exhausted and edgy and irritable even when I was getting enough sleep, even once I pared down my lifestyle to something very manageable and slow paced, even when I scaled back my workload, even as unschooling took a lot of pressure off my parenting, even though I basically love my life and have a great husband and good friends and adore my kids. Why did things still not feel right? And that dissonance was not a new feeling, as in postpartum depression, but something that I’d always felt to some degree, but gradually became too intense to ignore anymore.

In the months between then and now, I read and researched and learned a LOT about autism in women and how that looks different from what most people think autism looks like (for complicated reasons – I can explain more another time). I formed a support group for autistic women and women who, like me, were thinking they might be autistic, where we could share experiences and ask questions and sort everything out in a safe and supportive space. Those new friends of mine have been invaluable – I appreciate them so much.

Finally, I found a local psychologist who specializes in seeing autistic women, and I went to her for an assessment. It’s worth pointing out that this process can be very expensive and I wouldn’t have been able to do it if we hadn’t had the good health insurance that we do – I wish that more people had access to the psychiatric care they need, but it’s not always so easy.

I was incredibly nervous about the assessment – I felt vulnerable and even a little humiliated just by undergoing a psych eval – and was honestly scared that I would not get diagnosed with autism. Why? The idea of being autistic was like a missing piece in my life that suddenly made everything make sense. I was terrified that if it was taken back out of the picture, I would be left with the same old confusing mess as before.

But I did, in fact, receive a diagnosis of autism last week. It’s official. On the long drive home from my final evaluation appointment, I cried tears of relief and release.

I think I also cried a little for all the me’s I’d ever been – the shy little girl, the misfit teen, the lonely young adult – and what could have been if only I’d known then what I know now.

The psychologist also told me that my results showed chronic dysthemia, a low level depression that’s always been with me and explains a lot of why my energy level tends to run so low. In her view, the difference between neurotypical and how neurodivergent a person is tends to get “colored in” by depression and/or anxiety. This made a lot of sense to me as basically my efforts to meet the neurotypical world on its terms every day result in fatigue and vague sense of never being “enough.”

I know this will be surprising to a lot of people, and I understand why – I was surprised when I first realized that I might be autistic. I think this is largely due to the fact that very few people, besides people who are actually autistic, know much about autism – which several people have told me since hearing my news. But I can tell you that for me, it just means a huge weight has lifted off my shoulders. Knowing that I am, in fact, a perfectly normal autistic person, makes everything just slide into place. It’s an answer to a question I didn’t even know I was asking for the first 36 years of my life.

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14 thoughts on “Neurodivergent

  1. What an amazing and heartfelt post Erin. Thank you for sharing this journey with all of us….and kudos to you for taking the initiative to finding your little special quirk. We all have quirks of our own and it’s not always to talk about them. You are an inspiration!

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  2. I have students on the spectrum. One I don’t even know if he knows he’s on the spectrum. He’s a college student. It gets to the point where they are on their own. He snaps when other students around him are loud. He varies in topic when I’m lecturing. He’ll just raise his hand and ask something unrelated. He’s a great guy though.

    You are brave in a good way to talk about this.

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    1. Thanks. I feel like self-awareness as an autistic person has been so, so helpful to me. I cannot imagine how things would have been different for me if I’d known when I was a child or teenager, but at least now I know.

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    1. Thanks! The doc did say I was borderline ADD and might benefit from Adderall or something like that but I’m not sure yet if I will go that route. I am going to go back to her for some counseling sessions.

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  3. I think it’s wonderful that you have found something that gives you another little thread in the tapestry of your life. Specifically, the comfort of knowing you are not alone, that you belong to a very large and diverse community of people who do understand and feel the same way.

    I am a teacher at a school that is a hub for our area’s students with autism. It truly is a spectrum, one we are all on. I’ve met some truly incredible individuals through my job and the general population as a whole is slowly becoming more and more exposed to autism. I’ve seen the difference in less than ten years of how neurotypical students treat non-neurotypical students and life will be much easier for future generations.

    I remember your posts about having Miles assessed and your hesitation for him to be given an official diagnostic label. Did you face that same hesitancy in regards to yourself? Your post reads as if you’re relieved, but for someone as introspective as yourself it would be interesting for me to know your feelings along this journey.

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    1. Thanks for the encouragement. I do believe that things will be even better for autistic people, including children, in the future. That is one reason that I wanted to get diagnosed, so that I can be a self-advocate and also help raise the profile of females on the spectrum who are so often overlooked.

      I am going to write more in the near future about that fear of labeling because I have changed my perspective on it quite a bit in the last few years. I have a ton of things to say about this but I don’t want to completely overwhelm people so it will be one of the things that I am blogging about as I move forward. 🙂

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  4. What a brave post! Thank you for sharing this. I have so many emotions reading it, especially as a parent trying to best support a kiddo with an autism spectrum diagnosis. I love this term neurodivergent.

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  5. Wow! Glad I stumbled upon this blog.

    I was diagnosed on Tuesday with High Functioning Autism, I am 29 years old. My 4 year old son is autistic. I find it fascinating how many adults are getting diagnosed now.

    My childhood was full of mis-diganosis after misdiagnosis. I began in therapy at a very young age, and my parents never understood my odd behaviors and tantrums. They couldn’t take me anywhere. I couldn’t socialize. I chewed on everything. I suffered in school. I was in trouble for being too blunt. I would hide in the bathroom at school or fake sick to avoid being around people. I wouldn’t allow people to touch me. The list goes on and on and on.

    So by the age of 13 when puberty hit & coping with life became unbearable (I’ve heard this is common with autistic children, puberty can exacerbate issues), I was taken to a new therapist, and diagnosed with Bipolar disorder (something my neuropsychologist tells me now, was unethical for a child that age). I was put on heavy medications that I was told, on Tuesday, were actually sedatives. I became extremely suicidal.

    Once my parents realized this diagnosis did not fit, that they were really loosing me, they took me off the heavy meds & changed psychs. Then, I saw a psych who felt I was Manic Depressive & ADHD. I was sent to a treatment center far from my home for a year. While there, they added the diagnosis of Borderline Personality Disorder. This was all before I was 16 years old. It still baffles me that this much happened to me in a 3-4 year period. I was still a kid! I mean!

    Needless to say, not a single diagnosis ever actually fit. Borderline, Bipolar, ADHD, none. Nothing.

    Once my son was diagnosed with autism, like you, I began to read incessantly about it. I read Temple Grandin’s books and oddly found so much of her words resonating with me. I read account after account of women with autism. I began to see that what I experience every day, is actually something. So I went out on a huge limb, a HUGE TERRIFYING LIMB, and mustered the courage to bring it up at my son’s next appointment a few weeks ago. I was very hesitant, but I sincerely struggle with daily tasks. I really struggle with every day life at a level most people don’t.

    At my son’s final appointment with the Neuropsych, I asked for an appointment and she agreed. She gave me some testing material. When I gave her my mental health history, sensory issues, and explained my “tics” or stems that I do, she was shocked. She said I scored in the severe range, and was shocked how well I have adjusted for how bad it actually was for me. I am beyond blessed to have found a professional who actually listened to me and supports me. She told me repeatedly how special I am, how misunderstood I have been, and so on. I would explain a behavior and she would respond by saying, “I know autism, don’t worry, you are normal”. She assured me that, I have been told I was weird, alien, odd for so long, that I needed to change my thinking. I am special, unique, and have something to offer.

    I was TERRIFIED to even talk about my issues with her. I was shaking and could barely speak. I was so scared to talk about my middle school weirdness, my stems, the sensory problems, the mental health history. Now though, I am validated. I feel free. I have been so misunderstood for a terribly long time. I’m not really angry, just glad, relieved to have clarity. Almost like someone whose been in jail for 15 years and is finally found not-guilty.

    I never realized JUST how much I want to move my body. Like I want to rock and move constantly, but we’re told that’s not appropriate. I never realized just how badly I would force myself to socialize. I always felt so bad when people wanted to be my friend, or invited me places, or wanted to include me in projects. I would VERY reluctantly say yes, thinking “maybe this time” and I never was able to navigate the relationship. the job, the project, the semester at school, nothing. I repeatedly would get about 2 months in and fall apart.

    In December I decided, finally, that I would just keep to myself if it meant being happy. It has really transformed my mental state by NOT socializing. Just allowing myself to be exactly who I am. Some may see that as a bad thing, but I dont at all. I have no desire to have friends in person right now. I like communicating via email, I can collect my thoughts, I’m not having to look someone in the face, I can over explain if I need to, but I’m not doing this odd face to face contact where I’m worrying about turn taking, face expressions, if I’m talking too much, if I’m too close, if my body is weird, if they are weird. My mind doesn’t stop.

    My Neuropsych made the best suggestions. I used to do a lot of yoga, and she strongly suggested I practice again. She also suggested that I get a coloring book, and when I get overwhelmed just sit and color. I have been coloring like crazy for 3 days! We’re looking at some medication options because I have a tic that is self injurious (I scratch my head constantly & worse when I’m anxious). However she is not pushing me to do it. She said with my history, she wouldn’t blame me if I never wanted to be on meds or see a psych ever again.

    I told my Mom, Step-Dad, Sister and Husband about my diagnosis. I was so worried no one would believe me. I still am very worried no one will believe me for some reason. Like why I care about that, I don’t know. It’s like everyone could believe I was crazy enough to sedate as a kid, but the real diagnosis, I’m afraid no one will believe. So I’m keeping it to myself for now. I’m not sure what to do with the information. My mom tells me I have a good story, so I should write it down and share it, I’m just not ready to do it as me. Maybe anonymously!! 🙂

    Thanks for sharing your story, it inspired me to write out mine for the first time tonight!

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    1. Wow Aspie Anon, I’m glad you found me too! I am sorry that you had to go through so much to get the correct diagnosis and discover who you really are – but also glad you seem to have finally found a professional who understands and validates you. I totally understand why it is scary to tell people you’re autistic – I too am still afraid people won’t believe me, even with the official diagnosis. I think why it seems to matter is that this realization that I am autistic makes me feel like there is nothing WRONG with me or BAD about me like I feared for so many years, so sometimes I still fear that someone can somehow take that away from me again. They can’t.

      I know I have linked to Musings of an Aspie a bunch, but I highly recommend her most recent post on self-acceptance. I read it every now and then to remind myself that after being diagnosed autistic as an adult, it’s normal to have to take some time to fully accept yourself just as you are. If you would like to read that:
      http://musingsofanaspie.com/2015/01/14/acceptance-as-a-well-being-practice/

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