Autism: "Your needs are more complex and that is not something you should be forced to hide."

Hi Pidge,

Thank you for agreeing to tell your story to the Carenity audience!

First of all, could you tell us more about yourself? 

I am Pidge, a nonbinary person that has grown up in the midwest with southern parents. I was diagnosed with autism at a young age and received a lot of support from my family; I continue to receive that support even to this day as I still live with my parents at the age of 22. I have been working as a seamstress for the past 3-4 years. I can work from home, customize my workspace, and set my own hours which is the only reason I’m able to work at all. While I mainly do alterations and repairs, sewing is also one of my main creative outlets. I am a cosplayer and I make my own and my friends’ cosplays. I also make small items to make my life easier as a disabled person. 

Could you tell us about your conditions: Which one were you diagnosed with first? When did you start to notice symptoms? How did you and/or your parents react? 

My first diagnosis was autism spectrum disorder (at the time it was listed as Asperger’s syndrome.) For most of my life, all my other disabilities were assumed to be autism symptoms displayed in a strange way. My chronic pain was assumed to be overstimulation, my fainting was assumed to be caused by my struggle to remember to eat/drink, my rashes were just an uncommon symptom of autism. My parents were the first ones to notice things wrong with me. They were also the first to notice my other strange symptoms like my joints dislocating and intermittent allergic reactions. Things that would later be diagnosed as hypermobile Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome. But after years of being told they were overreacting, they started to believe it. So much so that when my symptoms started to become so severe that I had to attend high school virtually– four years before the pandemic –they too assumed it was just autism. 

I have been diagnosed with Bipolar disorder, OCD, generalized anxiety disorder, and psychosis induced by bipolar disorder. I went through testing in 2011, and it has been a complex process to determine how my disorders affect one another. There has been a lot of uncertainty, but it has not stopped my parents and mental health providers from finding an amazing treatment plan for me.

How long did it take to be diagnosed? How many doctors did you see? What tests did you have to take? 

After meeting someone with hEDS my mother suggested I get tested for it, which at was done improperly. At the same time, I was being screened for heart issues and possible seizures (caused by medication and POTS episodes). Aside from blood tests, I was given a tilt table test which was also poorly administered due to lack of staffing. Luckily my cardiologist was able to bypass these inconclusive tests and diagnosed me. Very recently, I got a referral to a GI specialist for all my digestive issues and to check for gastroparesis. I also met with a specialist this January for a second opinion regarding hEDS and was diagnosed.

How did you feel when you were diagnosed? Were you expecting it? Did you understand what was happening to you? Were you able to receive all the information you needed to understand the disease? 

I have always known I am disabled. There was never a “normal” version of my life in my head to be shattered by the reality of my disability. When I was 9, I would wonder if I would ever be able to get a job. My future included the limitations of my disability and the ableist society that makes it more disabling. My mental health diagnoses were a normal part of my life for as long as I can remember. I did extensive research on my physical disabilities before being diagnosed. I was able to live with someone who has all the same disabilities as me. That gave me the privilege not just read about these disabilities but be able to see and compare lived experiences. 

A lot of occupational therapy for autism revolves around being able to understand your body and what it is telling you as it doesn’t come naturally for us. Regular therapy teaches awareness for emotions since it can be hard for autistic people to identify our feelings. I understood myself before I was given a label for what exactly was wrong with me.

What is your current health management regime? What do you think about it? What are your treatments? Are you satisfied with them? 

I have an extensive medication list to treat my bipolar, digestive system, and a muscle relaxer for pain. I also receive IV saline through my port-a-cath three times a week to keep hydrated. I have a service dog to help me navigate the world as an autistic person. He can perform DPT to keep me from having meltdowns or to ground me. He also helps with mobility by pulling forward to keep me moving at an even pace or allowing me to pull up on his harness when I become unbalanced. He even helps me get up by letting me brace on his haunches. I use a wheelchair most of the time I am out in public to manage pain and protect me from fainting. For my mental health, I have a long list of coping mechanisms I have developed throughout my life to manage myself. 

What is or has been the impact of conditions on your schooling, professional or social life? What do you think is the most bothersome part of your daily life? 

I have never been social. I struggle to connect with allistic people because our communications methods differ so greatly. I also went through several abusive friendships/romantic relationships that isolated me from my peers, something that autism makes me more susceptible to. I have had to isolate myself from my community during high school due to my bad health. I was only able to attend class half the time and mostly stayed in the library to work on my own to avoid panic attacks from constant overstimulation of being in pain. By the time I graduated, it was clear to me college was not going to be my next move. I started searching for a job that could accommodate my many disabilities and I could never find one. I can’t drive, I live in a rural area with no public transit and that I need consistent support from my caretakers. 

You trained your current service dog, Grimm. Can you tell us about your experience with service dogs and how you learned to train Grimm?

My last service dog, Griffin, we got through an organization that closed due to unethical business practices. My family ended up with a $30,000 dog that had little to no training. I started working with local trainers. They worked hard to teach me the skills to train a dog. Tragically, he developed a heart defect and ended up dying of a blood clot. My current dog, Grimm, took a year and a half to train. I was lucky enough to still receive advice from my old trainers but all of the hands-on work was done by me. He reliably does his job for me, and he is well-behaved and unobtrusive in public. Service dogs never stop being in training. They always need work, or they start to lose skills and forget training.

You draw and share some of your psychosis visions. Do these visions scare you? Does drawing help you process? 

For me psychosis is a strange experience. I am able to understand in the moment that what I am experiencing is not real. At least in my mind I understand that. My body doesn’t. It’s easy to tell yourself “this stretched out man in the corner of my room cannot be real” but it’s impossible to stop the fear that comes with that tiny “what if.” That survival instinct is not something you can fight. It is reassuring to see my dog ignoring something that, to me, looks threatening and terrifying. If he doesn’t react to it, then it must not be there. I have seen other people do art as a means to cope with their hallucinations and it had always been suggested to me, so I decided to try it. Honestly, I don’t know if it’s helping. It feels nice to be able to have an outlet so these things don’t just live in my head, but it also makes them feel more real.

You also are a seamstress, when did you start sewing? Do you make your own designs? What do you spend most of your time on?

I picked up my hobby of cosplaying. It rekindled my love of sewing. Eventually word got around that I could sew, and I started receiving requests, so I became a seamstress. I work short days and take long breaks for my health flare ups. It’s ideal, aside from the fact that I don’t make enough money to live on.

What advice could you give to Carenity members also living with chronic illnesses? 

You deserve to take up more space than an able-bodied person might. Your needs are more complex and that is not something you should be forced to hide. It’s good to make noise when your needs are not being met. It’s good to take up the space you need to properly participate. You must love yourself and your disabled siblings more than you fear being an “inconvenience” to able bodied people. 

Many of our members have many conditions, fall into many social categories and find it hard to find others similar to them. You identify multiple intersectionalities in your instagram profile- autistic, physically disabled, queer. Are you able to connect in person and/or online with others are similar? How do you go about finding people to talk to about these issues? 

I found the #actuallyautistic hashtag in my time doing advocacy work on tumblr back in the early 2010s. As someone who has been deeply affected by autism, I have always considered it one of my disabilities (not in a negative sense.) Disabled and queer communities are deeply connected and when I finally came out, I was already embedded into those communities. I have never had to seek them out because there is so much overlap. If I find one hashtag that is used in one community, I’m usually able to find everyone else. 

A big thank you to Pidge for this interview!     

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Take care of yourself!