Autism

My Autistic Journey

Peaceful lake view
My Autistic Realization

Background

This is going to be hard for me to write and explain. I have been thinking about this, and researching it, for several years at least now. The easiest way for me to start off will be with linking to this blog post by Rory Reckons on Autistic burnout. This, by far, is the best explanation of what happened, is happening, to me since about my late 30’s to now. It is so close to what happened, how I was, am, feeling that I could have written it myself.

My journey into the possibility of Autism began while I was researching my rare disease periodic paralysis (PP), and all the possibly accompanying comorbid conditions. That lead me into getting whole genome sequencing (WGS) done to try and find the causative gene for my rare disease, and any other possible things that may be causing other symptoms. I saw a few genes come up talking about autism, but didn’t really think much about it because I always saw the stereotypes in the media and thought that isn’t me. One that came up in the results, that matched a lot of my symptoms, was Ehlers-Danlos syndrome (EDS) and another was mitochondrial (mito) disorder. In the support groups for my periodic paralysis I saw many talking about their hypermobility and EDS, and a few times I heard people talk about the possibility of mitochondrial disorders being primary or secondary causes of PP. So I joined some EDS and mito support groups and just started listening, because that is what I do and I want to make sure I listen a lot, make sure that it really is something that is related to me, and not something I am just wanting to be related to me. I think this is because I have been disbelieved so much in the medical community, plus I really don’t want to get it wrong because I don’t want to treat something I don’t have because I have been given treatments that have caused me so much harm I really need to get it right.

Anyways, I started hearing about people in the EDS and mito groups talking about autism more often and a possible link with autistic people having these health problems. They began sharing articles about autism and I started to see more people talking about being #ActuallyAutistic online. I began listening to what they had to say, reading the resources they shared, and realizing that this may explain who I am, and why I am the way I am. The header image explains the process I pretty much went through mentally in coming to the realization I am autistic. During this process I took several online tests, including many I don’t share here, showing that I am likely autistic, just another piece cementing for me that I am autistic. 

Another thing that I started realizing when looking into being autistic is the other things autistic people sometimes have too. Like attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), rejection sensitive dysphoria (RSD), demand avoidance, etc. Just like with autism I had these media influenced images of things like OCD and I thought that couldn’t be me, then I started listening to people who have it, and I realized it wasn’t really anything like that for most people and that I likely have it. So after listening and learning more again, I found a couple more tests to see if there was a possibility, and again found more that I believe I have as well. I also believe I have ADHD, OCD, RSD, and demand avoidance.

I am avoiding the terminology PDA, or pathological demand avoidance, because it is very controversial and I believe demand avoidance describes it accurately for me.


Testing


Co-Occuring Diagnosis

Official Diagnosis

* Rare Disease | # Genetic Link

  • Anxiety
  • Bradycardia
  • Depression
  • Double Vision
  • Hypermobility
  • Insomnia
  • Mild Cognitive Disorder
  • Mollaret’s Meningitis (Recurrent Viral Meningitis)*
  • Periodic Paralysis*
  • PTSD
  • Spinal Stenosis
  • Traumatic Brain Injuries

Self (SD) (Is Self Diagnosis Valid?) & Suspected (SUS) Diagnosis


Associated Autism Characteristics

  • Alexythymia
  • Auditory Processing Disorder
  • Echolalia
  • Hyperacusis
  • Hyperempathy
  • Hyposensitivity
  • Mirror-touch synaesthesia
  • Misophonia
  • Palilalia
  • Skin sensitivity
  • Tinnitus

Other Supporting Evidence

  • Strong empathetic connection to animals
  • Regularly told to stop making sounds with my mouth or body
  • Have meltdowns when get too stressed
  • Need to rock or sway to sooth at times
  • Was bullied at school, but some other kids stood up for me
  • Only had a couple close friends as a child and and adult
  • Substance abuse problems in my twenties
  • Struggled through school and only got some college done due to stress
  • Testing in high school showed very smart, but poor grades
  • Adverse reactions to SSRI’s
  • Reduced anxiety due to not having to interact in social situations during pandemic
  • Autistic mirroring (especially accents)

Things That Helped Me


Everything's Gonna Be Okay

S2 E9 - Carolina Sphinx Moth

In this episode Nicholas (Josh Thomas) goes on a self diagnosis journey of his own to discover he is autistic. He is aided by his family, and friends, who some see it right away and others dismiss it immediately, but then eventually come around. They did a really great job of showing what the self diagnosis journey can look like. This is of course in a very short time frame for TV purposes, but for most people this realization period is over months and years. Lillian Carrier (IMDb and Twitter) plays Drea, and is the Autism Consultant, on the show and Founded Ourtism. You should check out her work too.

I related so much to this episode and all the feelings that go along with the process of discovering you are autistic. The whole show is really great, but this episode really fits with this post. I hope you enjoy it too.


Conclusion

With all of this information I have researched, and the information I have gathered in listening and learning from #ActuallyAutistic people, I feel comfortable identifying as Autistic, ADHD, OCD, with RSD, and demand avoidance tendencies until when, or if, I am able to get an official assessment. As we know it can be very difficult, if not impossible, to get an official assessment as an adult due to many different barriers. I am #ActuallyAutistic and just need the world to realize my brain works differently than others and make accommodations for me to be able to function alongside everyone else. I will leave resources that have helped me below that I hope will help you too if you are struggling.


Resources

Websites/Hashtags

Twitter Accounts

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