Category: Autism

Hip Labrum Repair Surgery – 5 weeks post op

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It has been a big milestone week!

I started Monday morning in PT with my usual therapy routine and at the end we added weight bearing tests. First I stood at the edge of the table and just slowly shifted my weight from foot to foot “until it felt ok”. The first one felt like waking my hip up a bit but the second one felt pretty normal so then my therapist told me to do longer holds on my right (surgical)side. After a few reps of that she watched me while I changed to shifting my weight to my right foot and then lifting my left foot off the ground. At the first rep she said “Oh perfect! No hip drop at all! Do 10 reps and hold for 10.”

After that I did step throughs at the edge of the table. Which is basically just walking one step forward and then backwards next to the table, while making sure to use heel to toe foot impact pattern. That took a lot of focus since I’m usually a toe walker myself (bad I know!) I did 20 of those and my therapist announced I was definitely ready to be walking this week. I also did standing straight leg kicks forward, to the side, and back at an angle on both legs – very minimally of with the hip extensors of course and with no resistance.

She told me to go down to one crutch in the meanwhile and if I do well with that I would be able to drop that and be free after my session on Thursday. That first night I felt pretty good but decided to fire up the ice machine for sleep just in case. I probably did not need it, but I decided any time I do a big new thing I will add ice pre-emptively for the hip flexors to help keep the savage beast soothed. The approach seems to be working so far as I woke up feeling just fine!

Adjusting to just one crutch was weird at first and I just slowed myself down to about a quarter of the speed I had been going at with two crutches and then I was fine. Just like drilling Jiu Jitsu moves, I had to practice the movement slowly first to make sure I do it correctly – and as I gain the muscle memory/dexterity/strength, the speed is coming back slowly on its own. Pushing speed first is how injury and pain happens.

Tuesday/Wednesday: in the office

I went back into the office again on Tuesday and Wednesday. I was super slow moving around of course and I allowed myself to stretch out in a more comfortable position as well for the day. I’m still going to be sticking with the pattern of working from home on days I have physical therapy just in case I end up having a really exhausting session and just need a lie down afterwards.

The walking practice does definitely exhaust me. I’m not sore at all so far but I’m definitely really wanting to nap by mid-day. Hopefully I’ll build my stamina back up soon but I’m doing my best to reign myself in so I don’t overdo it and flare anything up when things have been going so well so far!

My boss picked up some supplies for me from the hardware store to repair my old wooden cane, so that’s going to be my project for the weekend! I took it into the back of our warehouse and got it structurally sound again, but now I need to sand it down and figure out what I’m going to do to finish it out and make it pretty again.

Being in the office these two days means I get to pop in on the daytime Jiu Jitsu classes again as well which has been nice! I’ll be planning the same itinerary for next week as well since it seemed to work out pretty well this week without too many hiccups.

Thursday:

Back at physical therapy again today, my therapist said we that I looked really good walking in on my one crutch and that when I did my one-legged stands and movements my balanced looked rock solid on my surgical side. So she okayed me to walk without my crutches a little bit in my apartment this weekend if I felt up to it. She additionally told me that we could start pushing a little bit more range of motion and a tiny bit of external rotation (she specified TINY). I translate that information to: I’ll move myself as far as she moves me during her passive range of motion work but I’m not pushing anything on my own.

She also mentioned that she might be starting me on the stationary bike soon for session warmups. That got me all excited about getting back into outdoor biking and she slapped me back down pretty quickly from that – but said I might be able to get back outside before the weather gets too gross for it.

I also got to add on sets of shallow bodyweight squats to my routine as well today – those felt pretty good! Basically, activating muscles and moving around makes everything feel good, so it’s just a matter of reigning it in and riding that fine line of enough to let it heal, but not overdoing it or causing anything to flare up.

Friday:

Today ended up incidentally becoming a work from home day as well because my coworkers were unable to pick me up this morning. So everyone missed out on the momentous moment that was me being able to put on leggings for the first time since surgery! Since my PT said I could bend a bit more, I decided to see if it was comfortable to bend far enough to put on leggings, and I didn’t feel a stretch at all in my hip even to straighten my socks! Now having shorter legs probably comes in handy a bit here; but still!

This made me realize how much my legs need the biofeedback of compression leggings. It’s a small thing but it really does help me feel so much better after spending over a month wearing baggy shorts. I have a lot of sensory issues that go along with my autism: temperature regulation, touch, etc. – and they are a protective barrier in that regard. I also get episodes of orthostatic hypotension, basically a circulation/blood pressure issue where they tell you to watch your fluids and electrolytes levels and I also tend to get swelling in my legs a bit – compression leggings help with the swelling. Finally, I also have a connective tissue disorder that affects everything, and the little extra bit of outer layer just sometimes feels like it’s just the tiniest ease of that burden.

Anyhow, that all said, I love my compression leggings. In fact, I just ordered some more because why not?

What’s Next?

I see my surgeon again on the 8th which will put it in my 8-week post-op update. Depending on how news is flowing I may then switch from weekly updates to every other week or monthly updates on surgery recovery. The goal is for this series to just naturally morph into a training log back to the tournament podium.

Back in the Groove

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Man, it has been a crazy last few years.

There were quite a few long stretches of time where I basically quit mentally with my training and came within a hair of quitting physically as well. Between losing all my training partners due to academy drama, covid, and then my knee blowing out sideways – it was a lot.

Through it all, I gained an excessive amount of weight of course. I went from walking around comfortably around 140 lbs up to 192 lbs at my peak after surgery when I was immobilized for months. The extra weight puts pressure on my already wonky joints (I have hypermobile EDS), as well as caused an increase in overall inflammation/pain, shot up my cholesterol, and just made me feel like a washed up has-been. Having a significant amount of body dysmorphia and old history of an eating disorder did not help with that either.

March of last year is when I was able to start moving around a bit (3 months after surgery). I had a lot of limitations and twice weekly rehab since I was basically learning how to walk and use my leg all over again. There was a lot of nerve damage due to the extent of the damage to my knee and it was months before I could consciously flex my quadriceps muscle group. In summary:

2021: Awarded black belt in March, knee injury happened 3 weeks later in freak training accident. I knew it would put me down for a while but wasn’t sure how long – surgeon wanted to wait and see how much it could heal on its own before he did any surgery. It was frustrating going from 6 week appointment to 6 week appointment without a concrete recovery timetable answer – all while paying out of pocket for therapy twice a week (no insurance of course). In December the surgeon determined it had healed as much as it could on my own and did a 3 hour long reconstructive surgery.

2022: My sports orthopedic surgeon was happy with the outcome and promised me an eventual return to full usage. I’d never had a stiff joint in my life but he purposefully wanted it to heal stiff so it would be as strong as possible for all the impact I would put it though. This translated to many tears in PT when it came time to work on pushing the range of motion and I was on the watch list for a second procedure to clear out extra scar tissue. (Better that option than for it to heal too loose and have to get the whole procedure done over again.) March is when I hit that peak with my weight just as I was starting to be allowed more movement and could start working my way back down slowly. 6 months after surgery I was allowed to start moving around lightly on the mats with a special made sports impact brace to protect the healing ligament grafts. In December of 2022 I got the all clear to return to training without any restrictions – he said it would take another 6-8 months for me to feel fully recovered but I wasn’t in danger of damaging the reconstruction work he did. So I signed up to compete in January at the Europeans.

2023: So far I’ve competed at an event almost every month. It was a fight to get my weight down to make medium heavyweight (163.6 lbs) for Europeans, but it felt like a huge accomplishment to have a chance to be back on the mats and I was just tearing up in the bullpen as well as before/after all my matches. Honestly I feel pretty emotional and grateful at each event I’ve been to so far. I know I haven’t been training at my optimum in order to expect to win events, but the only way I will recover my movement and proper mindset is to just keep pushing myself and embracing the suck.

Currently:

I finally reached a place where I feel confident using my surgical leg without being on guard at all times – so that means I’m ready to get serious with my training again. I have most of my training partners back thanks to my coach opening a new academy where we can feel welcomed again, plus I’m now working a job that is a supportive environment for both jiu jitsu training/competing and my autism quirks.

I decided it was time to make the push to get back to my light weight division (141.6 lb) for the Master Worlds tournament next month. It’s a lot of hard work, but with support from my team mates I am able to keep my focus and am reaching or exceeding my weight goals each week. Self-motivation is a thing, but knowing my team and coaches have my back gives that motivation a solid foundation. Working from that foundation I feel my confidence and drive returning again, like I haven’t felt since my mid/upper purple belt days!

With a little extra push I’ll be able to make the goal of light weight early in time to compete in another event a few weeks before master worlds – then I can coast and let my system stabilize before the big event. I would just prefer to not have the first time I manage to make weight be at one of the biggest tournaments of the year.

I love seeing the camaraderie of our academy and all the new people coming in almost every day. After some dark times, the new chapters going forward are looking bright!

Moving in the Right Direction

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A lot has fit into the first few weeks of the year!

I am absorbing the impact of my official autism diagnosis and what that means for me. I’m still the same person I’ve been my entire life, just with more knowledge. The doctor gave me some insights that I hadn’t thought of before that I am trying to learn to work with.

That same week I had a whirlwind 3 day trip to Paris to compete at the European Championships. It was my first major event as a white belt and felt like a full circle thing making it my first major event as a black belt. I did not know what to expect at all and was just thankful to be there – which is what I expect to be the common theme for all competition events this year. There was doubt I’d ever be able to safely compete again so get getting my toes on the mat out there again was such a meaningful thing that I was tearing up through the entire process (I also threw up before from the nerves). There are a lot of movements that I am not able to do yet, but my surgeon said I’m not in danger of damaging the repair work he did in my knee. It will be another 6-8 months before I start to feel “normal” again with it but in the meantime the more I keep trying to work with it, the better my final result will be.

I just did another competition event this past weekend in Atlanta. I definitely was slow and made strategic errors that would have given my coach a stroke if he had been able to be there watching. It’s going to be a long process of learning all over again and it really sucks because I know I’m not performing at my potential – but I also know if I don’t push through and put myself out there I will not get over it either physically or mentally.

Having a supportive team and extended bjj family makes a world of difference for me – and I love our bjj community, even people from other teams cared enough to check in or give me a lovingly stern talking to about some stupid thing I did. Coach was not exaggerating when he told me that he didn’t feel like he even started learning Jiu Jitsu until he got his black belt – it feels like I’m a white belt all over again. I’m working hard to keep myself in a teachable headspace and open to learning new things – at the same time I’m trying to be the best example I can be to our new students.

I will be competing again this next weekend in Memphis – because the only way I can get over fear is to just push through it and not let it win. Right now I’m trying to get my competition mindset aligned, at the same time as trying to convince my body that it can do movements that I have been guarding against for the past two years.

Synopsis: I’m super thankful to be getting back out on the mats again. It’s a process that I am trying to enjoy because I know that while it sucks, I’m moving in the direction I want to be going and am surrounded by people who care about me as a person.

Goals Achieved!

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I’ve never been one who sets New Year resolutions. I don’t like the idea that some random start time for the year is what you wait for to make a change in your life. I tend to choose personal life events as benchmarks for progress goals – and it works for me that way. This year my life events have synched up pretty well with New Years so I figure I may as well get on the bandwagon for a change!

At the end of 2021 I was scheduled for knee reconstruction surgery (my fibula was basically torn off from all upper attachments and PCL was shot) and I decided that since I would be down and out for a significant amount of time, I would make the most of it. I did not like where I was stuck in life and had been unhappy for quite a few years, so the forced “stop” of everything seemed like my cue to shake things up and rebuild.

First step: I got myself into regular therapy in the fall of 2021 (a few months before surgery). I wanted to try to sort out what was wrong with me that I couldn’t just accept things as they are and be happy. I highly recommend anyone who feels stuck or at a transition point in their lives get a good therapist who is trained to help with the process!

I had been in a financial hole for a long time. Chronically underemployed my entire life (as is the tale for many other autistic adults), I’ve learned to live on very little and just try to keep a positive “make the most of it” outlook. Around the time of my surgery, I received a job offer from one of my team mates to work as a project manager for his company. This would be something completely new and different from how I have lived my life previously which is a terrifying prospect. However, what I had been doing wasn’t working for me anymore, so I decided to go for it. What I found was a perfect fit for me, with great coworkers and a supportive work environment.

I also decided that a total break from my old training academy was needed. This was super hard to do as I had invested over a decade of my life into that place, but as time went on things changed and it was no longer a system in alignment with my or my coaches’ ideals. Coming to that realization meant I had to give up on it and admit that I had failed in my goals to be that person who could help keep things together. Continuing to struggle against a system not aligned with what I want out of my jiu jitsu journey would just lead to more stress and tension for all parties.

I left with no idea where I would be training once I returned after surgery, but I had reached a point where I could even see myself not going back to bjj at all. Shortly after I left, things happened resulting in my coach dropping them from the team and immediately starting the planning process of opening a new academy. It was a slower process than anyone wanted, but now we have a gorgeous new facility with coach teaching the majority of the classes and pretty much everyone in class is someone who I have enjoyed training with for years.

These three changes: Therapy, new job, and leaving the old academy have brought about so much positive change! When visiting with people I had not seen in a few years they commented unprompted that I had my sparkle back.

I now have excellent health insurance through my new job. I have been without insurance for over a decade and went in with quite a list to dump on my new PCP. So far, I have been officially diagnosed with hypermobility syndrome which explains a lot of my chronic pain and injury history, as well as a few other ongoing issues (the echocardiogram for that was fun!). I see a dermatologist in the spring and the geneticist is offering to do a DNA screening for autism markers that any inquiring family members could check for.

My insurance also (amazingly) covers my official neuropsychological screening that I completed last week. I will see the doctor in a few weeks to go over the results of that. At my intake session for that in October she said she could confidently diagnose me as autistic without testing, but since insurance covers it she ordered it for more insights.

Having an official autism diagnosis has done wonders for my mental health as well. I’ve “known” for a long time, but to have the professional assessor agree with me really validates everything. I’m feeling more free to be myself on a daily basis and am learning how to take better care of and be kinder to myself.

Stepping Forward

So now I’ve got a solid foundation to work with again! I have a good job that pays well and is fairly flexible for training and competing, training bjj directly with my coach once again and getting reconnected with the vibe that got me hooked so many years ago, ongoing therapy and official diagnosis for how my brain works to help guide me going forward, and I was able to move into my own apartment and be able to build a homey retreat for recovery.

I signed up to compete at the European championship tournament next month. I’m still trying to drop the surgery weight so I’m competing in the medium-heavy division. Coach said I’m strong enough to do heavy weight if I wanted to (thank you year and a half of physical therapy), but I’d rather work my way back down to middle or light weight since I move better in those divisions. Who knows? Maybe I’ll move up permanently – I’m just happy to be getting back out there! I want to see what my baseline is, so what better way than to just dive into a huge tournament? My surgeon said it would be another 6-8 months until I get back full functionality in my knee, but that it is safe to do full impact now and would heal more quickly and completely with more usage.

I get several weeks of PTO per year but I am trying to save that up for trips to Brazil and Japan, so I’m attempting to do Europeans as a “work from home” option and bring my work computer with me. If it works out well, I may be able to do that for other events. I am also signed up for the Atlanta Open and Pans already. I plan to hit the Abu Dhabi pro circuit once I have found my stride a bit more.

It is going to be a fun process moving forward in life with official diagnosis for my physical issues as well as my autism. Knowing where I have deficiencies, I will be able to work and strengthen around them easier instead of just guessing. It also gives me slightly more confidence to advocate for myself when needed. Just because I CAN push through doesn’t mean I have to, especially when the recovery period for my “push through” is so much longer than it is for others and affects more than just that moment. Affording myself that grace to recover properly as well makes my “on” moments much higher in quality as well!

In a nutshell: 2022 was all about tearing down and rebuilding my foundations. 2023 and on is going to be about building a structure on that new solid foundation. Mentally, physically, emotionally, and financially I am in probably the best balance of my life and I am excited to see what I can do!

Next Chapter: New Jiu Jitsu Academy

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It has been a turbulent past few years. At the end of 2021 I had a major knee reconstruction surgery and decided that in my down time I would take charge of things and set the foundation for my comeback. After spending so long running myself into the ground physically, financially, mentally, etc. I declared 2022 to be the rebuilding year – so I would be going into 2023 in an overall healthier state.

New Academy:

I started with breaking from my old training academy, staying with my original coach of course. That’s a long story I won’t get into since I wrote about it already (Click Here for that post). It sucked so badly because I knew that change would affect more than just myself and would leave my students confused and feeling abandoned. However, I realized that whether I acted or not others were already being affected/hurt – so I may as well be an active participant instead of a powerless observer.

Since then, my coach dropped my old academy from the team affiliation and has opened up a new academy. Now those of us who prefer his teaching and training methodology can have a place to call home once again. I do feel guilt about the people I left behind who I care about, but also have to remind myself that they are (mostly all) adults capable of making their own decisions for themselves. Some of them will come to the new academy, some will stay where they are – either option is completely valid! I don’t care where people choose to train, if they are cool with me I’m cool with them.

The team has already added several new affiliate academies to our ranks in the past few months as well! I’m excited for the future of our team, and most of all getting to train again the way that I used to under my coach once more. That’s what got me from day 1 to top ranked at each belt level up through purple. I fell off on the rankings toward the end of purple belt since I wasn’t able to train full time with my coach anymore, and so many other things were changing around that time that I was clicked into survival mode long term.

There has been enough negativity over the past several years and I am just moving on and refusing to marinate in it now that I have other options. It has taken and will continue to take a lot of therapy to reach this point – but things are good now, and I don’t want to let the past overshadow the future.

I am looking forward to starting up a new Ladies BJJ program. Previously I grew one from the ground up using leftover time slots and no real support or backing. I did the marketing, lesson planning, networking, and follow ups myself. Now not only do I have enthusiastic support from my coach and his wife who own the new academy, I also have a team of experienced ladies on board to help me, and prime time training slots. No longer the afterthought!

Training:

I am finally able to train consistently again – and it feels amazing! It has been about a year and 10 months since my knee injury and I had started wondering if I was ever going to be back again. Being sidelined for so long is a major issue since Jiu Jitsu is my autism special interest – I can’t just pick something else to fill that space while I wait for the green light once again. I watched myself being migrated to the outside of the circle once again, where I spent my entire life up until I found Jiu Jitsu – and it brought back a lot of unpleasant memories/feelings.

So far I am just a little over two weeks into regular consistent training and I can already feel myself regulating and relaxing once again. I do still have to be cautious of my reconstructed knee, but I see my surgeon again on Dec 7 – that will be a year post-op and he promised to give me a final clear to compete again. So I signed up for the European Championships at the end of January. I won’t be in shape or in my regular weight class for it, but just getting on those mats again will feel so good!

Training in the new academy with all the old familiar faces just feels like a breath of fresh air – the world is as it should be again with coach and his wife as the co-owners. It is just amazing!

Autism Stuff:

About 3 weeks ago I went in to get started with my Autism assessment. Previously (10+ years ago) a diagnosis was suggested by a therapist but the process for official testing and diagnosis is very drawn out, and prohibitively expensive (several months’ worth of my then income). Drs who are able to do the official evaluation generally have long waiting lists and insurance does not usually cover the testing process.

My new job (as of the beginning of the year) offers excellent insurance that actually covers mental health testing with just a small copay. So I decided to take advantage of this and get the official testing done.

My usual preparation method for any new experience is that I will mentally rehearse every possible interaction and outcome so that I can know going into it what to do. Incidentally, this is why I don’t usually do last minute outings – since I haven’t been able to mentally prepare for all outcomes. I am not able to react appropriately on the spot, so I have learned over the years that I must spend the energy beforehand preparing all possible interactions in order to be able to connect with people in a way that gives them a favorable impression of me.

I was told I should not do this for my intake session or testing – my therapist friends told me that unfortunately they don’t evaluate you on how well you can adapt around your deficiencies. So while I don’t want to “play it up”, I also don’t want to mask and pretend to be okay with everything. The thought of not allowing myself to prepare meant the doctor got to do an intake on me completely keyed up. At the close of the intake she said, “well I don’t have to send you in for testing in order to confidently diagnose you as autistic, but we can go ahead with the testing if it’s not cost prohibitive for you.” I want the extra insight so I’m opting to do the testing process – which is scheduled for Dec 21 with a meeting with the doctor on Jan 23 to go over results.

So up until now I have operated on the premise that I am autistic, but there was just enough doubt that I put a lot of things in a mental “maybe” box… Now those maybes need to be sorted through. Realizing that growing up it wasn’t that I was stupid, or not trying hard enough to get on and fit in – it’s legit that my brain works differently, and I am disabled in that regards. Can I function in life? Absolutely I can, but it takes so much extra effort and I just want that struggle to be validated for the sake of my own mental health.

In Conclusion

Things are good and moving in a positive direction. I personally have a lot of healing to do, as does my local team, but we are all on the correct path now though and the future is bright!

I’m Thankful For My Injury

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Warning: Lots of feelings here!

I’ve been down rehabbing a major injury for 18 months now. It has been difficult to be so removed from “my thing” for so long and I have gone through many phases of mourning, anger, and sadness. Now I am finally reaching “hope” since my surgeon has cleared me to ease back into training with a check in another 4 months to give me a final clear to compete once more (eye on the European Championships!)

In the midst of the process, I have been doing an assessment and re-organization of my life. My goal is to build a better foundation for myself moving forward with my return to the competitive circuit. I was running on empty for so long; mentally, physically, emotionally, and financially. I never allowed myself to get caught up in any of these things because I felt like the forward momentum was the only thing keeping me upright and focused. I knew it was unhealthy, but I was trapped in a vicious cycle.

Financially, I had been living off about $1,200 a month (pre-tax) between teaching bjj classes and doing massages in my office. I got really good at living at that level – I used a combo of bus and bicycle to get around (60-90 mins commute each way/day), rented a small bedroom, and did most of my own cooking on the cheap. I would ride an overnight greyhound bus to tournaments in order to save on airfare and hotel expenses, got exceptional at trip planning (went to Europeans on $500 airfare and lodging included), would work tournaments to offset travel costs, and somehow managed to not go into debt.

Mentally/Emotionally I was running myself into the ground. Due to issues at my long-time academy (see This Post for that story) I lost all my main training partners and was still expected to perform at peak level. I couldn’t disconnect like my teammates who had left – so I had to pretend I was okay and keep focusing on my goals. It felt like walking up a sand dune – I was still able to reach my goals, but I had no energy left to celebrate or enjoy the view since I knew I had to go right back into the pit. Competing became more about the trip/escape than the actual event itself. I was desperately hopeful that if I just stuck it out, it would circle back to the way it used to be.

One of my autism features is that I can’t read subtext – if someone says something, I believe them. So many promises were made to me that things would get better “we are working on it”, “trust us to get this done” – I went emotionally bankrupt waiting to cash in those promised checks. I saw the pattern and still chose to trust it even though I knew better logically – because I couldn’t see another viable option.

I know I allowed myself to be manipulated: I hoped that in doing so things would get better and it would pay off where I was. Foolish hope I know, when all the people who cared for me were pushing me to give up and move on. I hate that in allowing myself to be manipulated it made me complicit in a system that hurt so many people that I care about. So far no one I have spoken with has laid any blame on me, but I apologize regardless of blame – and I think it is helping the healing process for everyone.

Getting injured force stopped my hamster wheel and left me in complete disarray – I’m almost at a point where I can be truly thankful for it. I eventually would have hit a breaking point mentally, and I don’t know that I would have recovered from that – and I know I was so very close.

I just parted ways with my therapist who has helped me through this transition process to leave my old academy for good. She admitted she was rooting for me to leave but of course professionally couldn’t insert her own opinion on the matter – Her that her relief/celebration when I told her kind of gave her opinion away of course. She also guided me toward a place where I can finally have an official ASD evaluation (scheduled for next month). I’m hoping that they will be able to help me identify areas that I don’t realize I’m compensating and help me find better tools to bring me those to balance a bit.

Financially I’ve gotten set up in a much better situation. I took a job working for a teammate as a project manager. Another autistic feature of mine is that I am really good at pattern recognition and organization of complex systems – so this job is a perfect fit for me. It also pays well enough for me to get my own apartment and (slowly) pay off my surgery bills. Since the majority of the other staff members also train bjj, we have mats in the warehouse where I’ve been getting my training groove back slowly.

The lynchpin was me finally leaving my old academy and breaking the cycle, and it took my injury shaking up things to do so. I have a lot of healing to do still mentally but my coach has my back, and I can finally see the light at the end of the tunnel.

People have been messaging me all kinds of different things after my writing that initial “break up” article. I had people from outside my association/region relating to it, local gym owners commiserating watching the decline in my old academy’s local reputation, students wishing me well and being sad for me. I also had people telling me that I needed to share all the good things about my old academy since it wasn’t all bad – but the bad overshadowed the good too much and made me so miserable for so long that the best I could do was try to be balanced with my initial break up article.

There are a lot of feelings flying around, and my team has a lot of healing to do. It sucks so much to see how deep a wound has been caused by just a handful of people. What I appreciate is that our coach is taking active steps to help mend the hurt – because it proves that he genuinely cares. He hates giving up on people which is why dropping my old academy from the team association was such a drastic step for him. There are still many people there who are greatly loved, and it makes it that much more tragic of a development. Not being allowed to talk about things (however ugly and uncomfortable they might be) keeps things from ever really healing and is what enables a broken system to thrive. I’m thankful to have things out in the open – it’s not pretty, but we can focus on fixing it now.

Anyhow, feelings are messy but I’m finally starting to make sense of mine – I can visualize now what it will be like next year when I return to competition, and I can’t wait to show what I can do when I’m actually healthy again!

Jiu Jitsu and Autism Pt 4

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It’s been requested over the last couple of years that I write a follow up post to my “Jiu Jitsu and Aspergers” series from back in the day. I thought I had gotten everything out with that series, and honestly it was a scary one to publish since I hadn’t disclosed my diagnosis to many people at that point. This might be a rehashing but there’ve definitely been changes since I wrote that piece 8 years ago! (Click Here to check out the article that started it all)

Two big changes:

The Aspergers diagnosis is now defunct and dated (as are the terms high/low functioning), my diagnosis is now simply “Autistic”. The other change being that I was promoted to my black belt last year.

So where does that leave me?

I’m still me. I’m learning and unlearning a lot through work with my therapist. Autism seems to have taken a recent spotlight through media representation, which is both a good thing and a bad thing. Education and awareness is good in general, but media will of course represent the extremes of something from their own vantage point, not understanding what actually goes on in a brain that is wired differently than theirs. The stereotypical autistic person they usually end up portraying is the sensationalized version that is a small fraction of the diagnosis spectrum.

Sensory Issues:

Since my last posting on this topic, I have had to stop driving a car. It is just too much input/reaction for me to safely handle. On bad/low tolerance days I could focus either on; watching my speed, staying in the lines, or driving directions. I got speeding tickets because I was having to focus so hard to keep my car going where I wanted it and safely avoiding all the other moving (and stationary) objects that I just didn’t pay attention to speed, or I would be swerving in and out of lines while watching my speedometer. It all added up to more stress than it was worth to me. I switched to a combo of bicycle and the bus. The bike is easier because I don’t have to watch a speedometer, and can stop easily if I need a focus break. It was less convenient on the surface (especially given the state of the bus system in Nashville), but a better choice overall.

More recently I have started paying closer attention to my tactile sensitivities. Can I push through the day with a jacket sleeve touching the base of my thumb or an odd feeling fabric making up my gi pants? Yes, yes I can. But these little stressors add up and if it’s something within my own control, shouldn’t I control it and make it easier for me to handle the things I have no control over? As such I’ve done a closet purge and gotten rid of items that I find uncomfortable, got myself a floofy fleece hoodie to relax in at home, and am eyeballing an oversized Totoro plushie I found online.

I recognize now that while I can’t tolerate light physical contact, firm to hard is actually soothing. I’m guessing this is another reason why Jiu Jitsu is a good activity for me!

Pattern Recognition:

I’m starting to make some realizations about how deep my penchant for pattern recognition goes. I have realized that I don’t read people’s facial expressions emotionally, but I can recognize a change in their behavior pattern that tips me off if something (positive or negative) is up. So, the better I know someone (and get the hang of their normal behavior) the better I can read their emotional changes.

It’s frustrating because I can predict to pretty good accuracy an issue down the road – but no one takes me seriously if I try to point it out. Then the crisis hits and they all scramble to address it and I just heave a sigh.

In Jiu Jitsu it has definitely been an asset! When I figured out the mechanics of a triangle choke, I was able to easily apply the same thing from all angles (inverted reverse triangle finish anyone?) Learning my training partners’ movement patterns helps make me seem like I know a lot more than I actually do.

Special Interests:

My primary special interest has remained Jiu Jitsu – I’m going on 11 years now of it! It brings me great joy that I’m surrounded by people who don’t think it’s odd if I want to talk for hours about training techniques or theory.

It has been particularly difficult for the past few years. First, we had all the gym shutdowns with the coronovirus, and then just as we were getting into the swing of training again I had a very bad injury. I’ve been recovering for over a year now and haven’t been allowed to train properly (at all in the past 5 months post-op). I had the best possible sports osteopathic surgeon piece my knee back together again – he is confident I will be back to full impact with no restrictions, it just takes time.

Not being able to participate feels like a part of me is just a dark empty space that nothing can fill. I’m back on the outside looking in again. I have tried my best to keep myself engaged through teaching and watching film, but it is a pacifier that can’t be sustained. It has reached a point where I can actually see a life for myself where I never train again, and it terrifies me. I am determined that I WILL be back!

Social Stuff:

Being around the Jiu Jitsu community has made me feel much more competent and confident in social settings. Overall, I think the sport attracts the awkward misfits who are more accepting and forgiving of the awkwardness of others.

I have never dated, and probably won’t in the future. It is so difficult for me to maintain friendships that adding deeper levels just seems an insurmountable task to me, more trouble than it would be worth. Just know that if I count you as a friend, that means something.

I find it difficult to make a good first impression without feeling like I’m putting on a show of something that isn’t who I really am. The term is “masking” where I hide my natural pattern of speech behind a mask that is more socially acceptable. Everyone has always told me to “just be yourself and people will appreciate the real you!” – but in my experience that is a well-meaning lie. The real me is awkward, makes people uncomfortable with bluntness and vocal inflections, doesn’t have a filter on facial expressions, etc. Probably the reason that, while growing up, the other kids in my peer group thought I was “creepy.”

Nine times out of ten, if I greet people with the real me, it just doesn’t begin or end well. So many of my (now) friends have said that when they first met me, they thought I hated them. If I wear my goofball mask it is a predictable role that other people know how to relate to right off the bat. It’s less stress in the moment, but more stress in the long term. Sometimes I’m so exhausted when get home that I just sit down and stare at a blank wall for a solid hour before I’m able to start to relax with a book or movie.

That said, it’s better than it was before. I’m more aware of my limitations and am getting better at regulating myself. Controlling the things in my environment that I have control over means I have more energy to deal with the ones I can’t control. Since people with Autism have to expend more mental/emotional energy to do simple daily tasks, I have to conserve my energy where possible in order to make it through the day.

Anxiety:

I had a 3-day long anxiety attack last week. I learned something new from my therapist through it. Since my brain has no filter for the world I will eventually hit “critical mass” and my brain/nervous system just says “no.”

I say it’s like boiling a pot of water. Everyone else can boil their pot uncovered but I have a pressure cooker lid firmly in place. The pressure that would normally just dissipate from the act of heating up the water (aka, functioning in society) has nowhere to go for me.

Even as I explain it, it sounds like I’m just making excuses. Especially when people try to relate by saying “I think everyone is a little autistic” – which to me sounds like a minimization of my own difficulties. I can function if I try hard enough, so I must be lying or exaggerating. The toll it takes on me though is not sustainable over the long term.

In Closing:

Not a ton has changed really. I am still me. I am just trying to learn more about myself so that I can be a better human. Achieving my black belt was a huge saga that I will one day possibly share, but I need to be a little further removed from circumstances before I do that.

As I have risen in the ranks, I have felt the responsibility to look out for my fellow students. I would spend my weekend rehearsing all possible questions and interactions that I could come up with so that I could have an answer for someone as opposed to my classic deer in headlights stare. They know I care, even if I’m still a bit rough around the edges.

I’ve been more open about my diagnosis in the past couple of years. I think it’s because I have come to accept it more and feel more confident. That said, I’m actually awaiting an official assessment through an ADA approved evaluation center. I’ve been diagnosed by several therapists but if it’s not done through the approved evaluation center it’s not considered “official”. It’s an expensive drawn-out process, which is why I haven’t done it before – but with the salary from my new job I will be able to afford it!