Coming Out

Note: I’ve been writing this for most of the day, and finally finished a first draft.  I copied and pasted it into 3HoursPast, with the intention of whittling this down for word count and possibly for content, to do my usual corrections of verb tenses and pronouns.  After I posted this into the blog form, I accidentally hit “publish” instead of “save draft.”  That published my post to your inboxes and feeds.  So instead of whittling and polishing as I meant to do, I decided to add a few links and publish as-is.   Thank you for stopping by, it’s been too long.

It’s been nearly two years since I posted here with regularity, and I still miss you. This post is not really about sewing, or Cake, or patchwork pillows. This post is the removal of a mask I’ve outgrown, moving past a persona I don’t want to use anymore to share the human being I am.   It’s messy, long, probably sharing too much and may be upsetting to some, but I think it’s important to write this for anyone out there who lives trapped in the kind of life I was living. It doesn’t have to be that way.  And I’d like to share where I’ve been and what I’ve learned while I was gone.

Last July, I was diagnosed with Asperger’s Syndrome. The DSM manual (used to diagnose mental illnesses) chose to remove “Aspergers” in the latest edition because it is named after a person, replacing it with “Autism Spectrum Level 1, no delay in speech or intellectual development.” I tend to refer to myself as an “Aspie.” Semantics aside, this diagnosis was a blessed relief, pointing me towards a community where I could contribute, grow, and be myself, giving me tools to better understand and manage my condition (instead of my shots-in-the-dark approach), and making me feel for the first time ever like I deserved to be well and happy in my life. I quit fearing “The Thing,” and dropped 29 years of resentment about being different- I felt fifty pounds lighter. I decided I didn’t want to die, after all. Perhaps my family would indeed be better off if I were here with them.

The diagnosis was the clearest-cut “end and a beginning” I’ve ever experienced in my life- more powerful than leaving my birth family as a teen, more than going to college or immigrating to the other side of the world, and more than becoming a wife, then a mother. Before last May, I had no idea that Aspergers could be expressed in any kind of person, not just in math-genius little boys who line up the train sets and beat their heads on the wall. I wish I’d known differently sooner. Let me back up and explain how I got to Aspergers. You were here, too, for part of it. You saw the outside, but let me explain the inside.

Two years ago, sometime after the Hummingbird release, I started “glitching” worse than usual. This was my private term for noticing when my perceptions of the world around me were either illogical or impossible, or when my mind goes blank. I was retaining very little information spoken to me, sometimes not even hearing it. This has always been something of a problem that I’d learned to compensate for, but my strategies were not working. When I sat to write a blog post, I felt deeply confused, lost in a sea of links and pages and photo files and swimming words. I started to make more mistakes, and to get nauseous headaches while sitting in front of the screen. I told myself I was tired, worn out, I’d rest after I got the next collection out and everything would be fine. I had less and less patience or time for my family, desperately trying to make Cake into what I knew it could be, failing, and also failing my husband and daughter.

Then one day as I rode the bus, a cyclist pulled up beside my window at a stop. To my utter shock, I looked into the face of my father when I glanced over. I sat there staring, going through my mindfulness/reality checks, expecting his face to melt into the face of a random dude as I brought awareness to my breath and carefully took in my surroundings. Instead, I picked out the particular line of my father’s jaw, the stormy blue eyes, the shape of his hairline, a scar on his hand, the shape of his fingernails. It scared me because even as I looked at him I knew it wasn’t real. As I pulled away, I knew it couldn’t be my father, aged ~32. He’s old now, living on the other side of the planet. After that, I went in for yet another round of psychiatric assessment.

I’ve spent years in and out of psych offices, primarily for PTSD treatment. This time, I very calmly told the doctor that I was hallucinating and needed to be checked. For me, hallucinations were always a Code Red- do not mess around, go talk to someone asap. I always felt my hold on what we call reality was less than firm, and had been vigilant about “imaginary friends” since late adolescence. I told the doctor my history of trauma, and answered a lot of questions about my current lifestyle, family life, and work. The doctor eventually cleared me of PTSD, saying my hallucination was possibly a PTSD after effect triggered by stress, and I should rest. He also cleared me of Bipolar disorder, which was nice. I’ve been called “bipolar” by plenty of people, and even wondered myself if that was The Thing, if one day I’d have to commit to mood medication in order to function. I definitely have soaring heights of productivity and blank times of nothingness, but I’m not Bipolar.

I got back to work and tried to rest more, though that quickly went by the wayside. I gave up trying to blog here on a regular basis, because assembling blog posts had become a laborious, painful grind. We started the Red Velvet Collection presale right about the time my attacks started. I’d wake up in the middle of the night, feeling like a burning dagger was being driven between my shoulder blades. I’d gasp, and writhe, and get out of bed so I didn’t wake up my husband, then lie on the couch, waiting for the Panadol to kick in. It took the edge off the pain so I could sleep. At first, these attacks were once a week and in the middle of the night. They became more frequent, sneaking up on me after lunch while I sat writing tutorials, sometimes circling my body. I thought they might be another one of those stress reactions, and I tried to ignore them, hide it, and get on with life.

By the time we were shipping Red Velvet dress patterns, I was having around 4 attacks a week. I was also doing too much. I remember putting together those shipments in a blind haze, with that burning dagger between my shoulder blades while I tried to plan my in-real-life shows and the Sewalong. I stopped eating much, wasn’t sleeping, and had a pregnancy scare when I stopped menstruating. I was ignoring my husband, and spending little time with my daughter. Worse, as the weeks wore on I felt my Reason fleeing me. It wasn’t the first time, but I thought I’d grown up enough and worked hard enough and changed enough with a stable enough lifestyle that my Reason wouldn’t do that anymore. I felt my ability to make sentences, to communicate, to think in an orderly way, to cook dinner or even clean up the bathroom was fading away into the black confusion I felt as a child. The house fell into a mess which amped up my anxiety. It was terrifying, and I felt like I was watching it happen from outside my body. I’m sick, I told myself, I’m really sick and when I’m well it will be ok.

I went back to the physician, I was having 5-6 attacks a week at any time of the day. She said I had reflux, and gave me medicine. I might as well have swallowed sticks of sidewalk chalk for all the good it did. I went back, got stronger medicine that also did nothing. Everyone around me was saying “Reflux this” and “Reflux that,” giving me well-meaning advice based on their own experiences. I tried it all and nothing worked. Besides, I had reflux during pregnancy and I knew this wasn’t the same thing. My body and mind were literally falling apart and fading away, and no one could help me even when I asked for it. I felt angry, a sort of rage I hadn’t felt since I was a kid, and I mostly turned it against myself for being so “useless” and not getting my work done. I kept taking the pills and suffering as privately as I could for two months. The attacks worsened in frequency.  and around the holidays, I quit being able to eat at all without it coming back up during an attack, often running from the table to throw up.

Finally, I had an attack that lasted four days. I spent most of that time in bed or in a hot shower or with my head in the toilet. The pain and nausea wouldn’t go away, so we dragged me back to the doctor who grudgingly sent me to have an ultrasound. She thought I was malingering. The technician checked me for ectopic pregnancy, then scanned all of my organs for signs of damage. The good news was everything except my gallbladder was fine. The bad news was, I had a gallbladder packed with stones and needed immediate surgery. I was really out of it, and by then I was so terrified of myself and my new inability to make sense of the world around me that I tried to just stay inside myself. I hate being hospitalized, too- needles make me woozy or faint, blood and guts talk does the same, I dislike being touched, I dislike strangers and always react very badly after being put under. The morphine was nice, though.

They let me go after 3-4 days, I really don’t remember my time in the hospital that clearly except the emails from my aunt in Texas. She’d taken me in when I was a teen and was like a mother to me. Her emails helped me hold everything together while I was stuck in the cold, bright, sterile hospital hooked up to machines that put fluids into my body and took them back out again. I must have worn her out, I know I wasn’t in a fit state of mind to communicate with humanity at that time. When I got home, everything was worse. I couldn’t do anything except lie on my back and binge-watch TV shows. Meanwhile, I still had two designs out on pre-sale from the RV collection and they preyed on my mind. I got heaps of messages and questions- rightly so, and it was maddening to be able to do exactly nothing about it even though the work was nearly complete. I swore to myself I’d never, ever ever pre-sale anything ever again.

About five days after the surgery, I woke up one morning completely black. I fought it at first, as I always fight when I wake up that way, because the blackness causes destruction if it takes over, and I know if I weathered it quietly, it would pass. But I was weak. I was tired. Everything hurt. I couldn’t fight and it took over. Everything around me in our little house seemed like a reminder of a personal failure, even our wedding photos covering one wall mocked me. I was really happy on that day, to be marrying my best friend. But I was also really overwhelmed by all the well-meaning strangers in my husbands’ family trying to talk to me, by the expectations everyone places on a wedding and what a bride should act like, and wishing I had my best girlfriend there to help me with it all. By the time we were taking pictures, my face was doing the weird face thing it does and later I was accused of purposefully ruining the photos. The ones on my walls were beautiful candids my sister in law took of us happily playing together on the beach in our wedding clothes, no faces. I liked those photos, to me they seemed a perfect representation of our relationship. But that morning, I couldn’t bear to look at them for one more second.

After my daughter went to school, I ripped them all down and smashed them into bits, trying to smash away the painful memory of how I “ruined” my own wedding by being weird. It wasn’t enough. I howled and sobbed and screamed, but it still wasn’t enough to quench the blackness. It was like fire in my veins, an aching hollowness inside, a poison- remembering every time I’ve done the weird thing or the wrong thing or a stupid thing and every time someone had mocked me for acting weird or using big words, and not understanding why I’m this way. My husband came home sometime in the middle of this and I told him I’d like to die, that I was sick of living this way and I hated my life, but I didn’t know what to do about it. He talked me down (it’s hard to sustain that level of emotion when you haven’t eaten solid food for weeks) and put me to bed. Later, my aunt and uncle in Texas Skyped me and I tried to explain these things, but I was falling asleep from the effort of all that rage. Later, they told me I seemed drunk (I wasn’t on anything). When they suggested I go get some “help,” I could have laughed if I had the energy. I thought-I’ve been seeking help my whole life, and it had not helped this weird problem. There’s no help for someone like me, I thought, I really should just go die somewhere and leave everyone else in peace. I said no, they can’t help me. Then my aunt told me to grow up and I did laugh. As if I knew what that meant, as if I wouldn’t have already done it if I knew what that meant.

Later that night, I was still black, but limp. Spent. I wanted to cease living, I wanted my husband to feel the same level of hopelessness and fear I felt. As if spreading around the negativity makes it easier to handle. (Pro tip: it makes everything worse for everyone.) I started talking about all the ways I could never commit suicide. I listed off method after method that was handy without leaving the house, and then started listing off ways that would be better because they’d look like accidents but were still unsuitable in one way or the other. I told him what to do after I was gone, how to look after our girl. I couldn’t stop, I couldn’t help myself, but I was also calm and quiet and lying in bed when my husband had enough. He went and called the men in white coats to take me away. As if in a dream, I got dressed and threw my wedding rings at him. I stood outside to wait, because I didn’t want to wake our girl. The men in white coats turned out to be EMTs in an ambulance who told me I could come “voluntarily,” or they could physically restrain me. I said I preferred not to go at all and they were wasting their time. For half a minute, I considered simply running. I couldn’t run as fast as those men, but I knew I could easily hide in the neighbourhood I knew like the back of my hand. But one of the EMTs looked like my cousin who had been a brother to me, tall and pale with red hair and brown eyes, the same bony look and soft demeanour. I let him put me into the ambulance. We pulled away and as I quietly refused while passively allowing blood pressure and temperature checks, I thought “I always knew things would end this way.”

Being committed was literally my worst fear come to life. Some children fear the boogeyman or aliens or monsters, but I was always terrified of being committed. I’d heard stories in my childhood about my father’s aunt being locked away for decades, but all I ever really understood about her was that she was “off” and “weird.” Weird like me, perhaps. My father taught me ways of hiding the weirdness when I was a kid, lest I end up locked away as well I suppose. I was always, always the most afraid of that. In the mental wing of the hospital, I found myself locked in a bright, cold waiting room with a man three times my size who was pacing and muttering. Later I found out he was schizophrenic and off his meds, picked up for raving and being violent.

A nurse tried to make me take Valium, which I refused, requesting a panadol and showing them my torso that was still bandaged. It took hours to get it, but they kept trying to push that Valium on me while I sat there quietly seething. One nurse came to try to persuade me and said I was suicidal. I said I was not suicidal, I simply wanted to cease living. The distinction was lost on him. I’ll never forget the way he cradled the Valium in his palm and leaned toward me quietly saying that next time, I should “Take more care. Take more care.” I felt like he was telling me to just kill myself and be done with it, but perhaps he meant not telling anyone around me how I was feeling. Neither sentiment seemed appropriate to me coming out of the mouth of a mental health professional. The night wore on and they gave me a bed to sleep on because of my condition. As the door shut behind me in my little cell, I gave up being reasonable and screamed and cried until I was spent. Then I got up and found a room where some people were watching World War Z with glazed eyes. I sat there too, and saw a very large woman carried past me, bleeding and screaming. She’d tried to cut her wrists on the bathroom fixtures. That’s suicidal, I thought.

I talked to a doctor the next day who agreed with me that I should go home. I was angry, very angry at being placed there. My husband took his time coming to pick me up, and said he’d been talking to my doctor, giving me an account of my doctor’s conversation that didn’t seem to match with what I had just experienced. I knew I was glitching, maybe I’d missed something, and I could barely stand the sight of him, so I let it go without arguing much. Besides, I’d been up all night. I still think it was wrong for my doctor to talk to him that way, I felt very threatened and like everyone around me was actively trying to make me crazy. I guess crazy is easier to understand, easier to write off. He took me home and almost immediately, I left to go stay with a friend. My husband said he’d not known what to do, that my aunt told him to call the mental health professionals if I got suicidal. I guess they don’t understand the difference between wanting to die and wanting to murder oneself, either.

I gathered the shreds of energy I had left to call my aunt and let her have it. I felt like she should see the after effects of the “help” I was supposed to have gotten.  I know she has an aversion to foul language and loud noises, I know they short circuit her system. I got her on Skype and let loose with the loudest account of my night that I could muster, using the most colourful expletives I could summon. I saw her “shorting out” through the screen, and continued to unload on her. Just before she shut the computer, she said I was lying (not so much, everything I said was true).  I wasn’t finished with her, and took to email to tell her precisely what I thought of her conservative world-view that she pushed on me and her church filled with dead-eyed hypocrites. That wasn’t quite fair, really, because I know her faith and my uncle’s faith is true, but I knew it would hurt her at least as much as I was hurting. She’s barely spoken to me since, except in a 20-odd page hand-written letter I only read much later. If I’d read it when she wrote it, I would have gone ahead and just jumped off a cliff. The not-speaking-to-me is a thing she’s always done (and denied doing) with me when she decides I cross a line, the first time it was devastating, the second time it was heart-breaking, the third time gave me pause, but this time felt more like a weight off.  I still miss her, and love her, and kind of wish I hadn’t screamed my message, and I do talk to my uncle.

Eventually I went home, and submitted to yet another round of counselling with a clinician who has helped me make positive changes in the past. I finished the last two Red Velvet designs and put them into the shop with very little zest or fanfare. I felt like my counselor and I were circling a drain, covering the same old ground we’d always covered. I wasn’t about to tell her about the things like glitching, I focused more on my sense of having no identity, of not feeling like I had a place in the world, of that nasty feeling I have when I’m around other people like I’m in a glass cube and can’t quite touch them or be with them. She gave me assignments, which I dutifully did, which had little effect. I started seeing friends again, though I wore out quickly. I tried to work events, though I barely had myself together and could hardly speak straight. I spent a lot more time with my daughter, soaking in her sunshine and trying to figure out how to keep her from becoming like me.  The signs were already there, she’s very much like I was at her age and I hated seeing it. I wanted to conquer The Thing so she wouldn’t have to. We got a cat. We went camping. I started trying to repair my relationship with my husband. I was depressed, in a low-level-functioning, blank kind of way. I got The Tee out, which made me happy for about five minutes until my inbox started to fill with hate mail.

Then one day, while reading Gawker comments (of all things), I read a throwaway line about how someone’s mother might be Aspergers, that it shows up very differently in women than men. I was intrigued and turned to google. I like to collect information about the variety of the human condition, and somehow I’d missed this one. I thought I’d do some interesting, diversionary research. As I settled in to read the first page that came up, something happened. This wasn’t a piece of light google research at all, this page was a mirror. I read there in that list all my everything lined up next to each other, with nothing left out. The weird medical ailments I’d given up mentioning to doctors (that I now know is all Sensory Processing Disorders), my specific failures (dropping out of college, losing friends as soon as they got to know the “real me”) and weak points (I am exceedingly clumsy, and that one problem I’ve always failed at fixing has a name- Executive Function), my strong points (tenacity), my gifts (I think in vivid, visual, synesthetic ways), my secrets (my reading comprehension is so poor that long ago I learned I had to read something 3-6 times before I had a hope of catching the meaning. As a gifted student, I simply learned to read faster and repetitively and shut up about it because grades were one of the few avenues I had to get approval). A few things didn’t fit, and I rejected others out of hand that later I understood were things I do actually do. I cried, and cried, and cried. Then I was done crying.  I was done raging.

I read the list to my husband without a preface, and he thought it sounded like something written about me. He reeled that back when I told him that means I’m autistic. He knows me better than any person on this earth, I’ve shown him more of myself and the things I struggle with than I ever showed any other person, and I trust his judgement over mine because he’s usually right about things. I needed him to help me sort this out. We took a few days to read separately and think, and even took some online Autism quizzes together to compare our scores. The big long 100-odd question quiz that spits out charts shaped like webs made us both laugh as we read out questions and answered aloud “Of course ——,” only to discover the other person put the opposite answer. By the end, without looking at our results, he tentatively agreed with me that autism was worth investigating. I made an appointment to see my counsellor to get a referral for diagnostics. She wouldn’t be back from holidays for a few weeks, so I had to wait.

Sometimes I thought “Yes! This is The Thing! It’s only autism, after all! I can work with this!” and other times I thought “No, you’re insane, you can’t be autistic, what does that mean, who am I, why are you still on this earth?” I read a few blogs by Aspies and felt a powerful connection to the lived experiences expressed there, and I read a book called Aspergirls that resonated with me, but I also didn’t want to queer my diagnostics from over-reading. So I tried to stay away from the blogs and books to work on my growing Tidepool Collection concept.

I was always a fearful, anxious child growing up, prone to panic attacks. My father taught me how to conquer my fears, to grab hold of them and to face them because living in fear of something means we live a life that’s smaller than it should be. That’s how I overcame fear of heights, fear of small spaces, fear of deep water, fear of people, fear of leaving my luggage behind on accident while traveling overseas, aversion to hand dryers- through exposure, grabbing onto the fear and realising my fear was more detrimental to me than the thing I feared. This is how I handled my uncertainty in this case. I sought out a local Aspergers adults group and decided to go to an upcoming meeting on women in autism, with a special guest speaker from Denmark.

The morning of the meeting, I was so nervous I threw up twice. But I was determined to see for myself, to face things, one way or the other. It helped that the meeting was at a big library on one of my usual routes through the city, so I didn’t have to think about how to get there. I dressed nicely for the meeting, as is my habit when meeting new people. I went through my ritual of putting on makeup, checking my hair, and making sure I was well-put-together from shoes to hairpins before leaving the house. I thought “At least I’ll know, and if I don’t fit there, it’s just one more group where I don’t fit in, no big deal.” The library has a large open square in front of it, and it was pretty full of students and families that morning. I walked to the doors and suddenly two young men approached me, letting the girls in front of me pass by. “Are you here for the Aspergers meeting?” one of them asked me. I nodded and they showed me to the meeting room. Later I found out that many people on the spectrum can “pick it” in other people, which is how they spotted me despite my normal-person veneer.

I don’t know what I expected to find in that room, but I was shocked at how familiar it felt. The motions of the bodies, the way one guy paced around at the edge of the room, the guileless friendliness, the butterfly-hopping conversations about engines and physics and conspiracy theories, the gesturing hands felt to me like I walked into a family reunion. The only thing missing was a Roman-candle war. I still can’t think of any other way to describe that moment, I was dumbfounded to walk into a room of strangers and to suddenly feel so at home. I’d never felt at home like that in Australia. This is not my life, this is not the way walking into a room of strangers usually feels. I sat and chatted with a young man, discovering that most of the people in the room can’t drive, either. Then the speaker moved to the front of the room and I was lost in her words. She’s from Denmark, raised by a single mother, and was diagnosed at 16 but other than that, much of what she said struck me to my core and spoke to my own experiences in life. I couldn’t believe it. This doesn’t happen to me, feeling like I belong in the space I’m taking up. I went home that day secure in the knowledge that whatever I was, whatever the diagnosis, I liked these people and got along with them. That felt like a massive win, I’ve been lonely for a long time.

I met a woman that day who has become a treasured friend, a real reciprocal woman-friend who doesn’t seem to bring along the confusing baggage that other women friends often do. She’s not my keeper, or my counselor, or my mother-stand-in, or someone who takes pity on me or is jealous of me or who wants anything from me. She’s just my friend. When I’m down, she knows exactly how to help me up, and I do my best to help her in the same way. I’ve learned more about myself from her and from our friendship than I ever did in any book or doctor’s office. I’m really grateful for her friendship.

After that, I got my referral and then went to the Attwood Clinic to be checked. The meetings showed me what I needed to see, but I also wanted to be formally checked out and know one way or the other what was the source of The Thing. Before the appointment, to quell my anxiety I went through my mental-health-meeting checklist and made sure I was very well groomed, clean, nicely dressed, well-made-up. I knew it wasn’t “Aspie” to dress well, but it is a very ingrained habit and I really could not stop myself doing it. If I’m uncomfortable about a situation, I compensate by being as well-presented and prepared as I can be. My husband came along and was also interviewed, I took a test, I was asked questions, though some of them seemed to come at random and I felt my mind go blank.  I’d grope around mentally for a minute before finding the answer, feeling embarrassed I’d fumbled.  I was there for hours and hours. Later on, riding home, I went back through the whole thing and berated myself for showing my glitches. I always do that- rewind, look for what I did wrong, berate myself so I would get better. Then I stopped and had to wonder if those random questions were meant to make me glitch. Then I stopped berating myself for glitching.

They told me I’m on the autism spectrum, Autism Level 1, and what that means- I am high-functioning autistic.  Though that sounds nice and mild, or maybe fun it isn’t always. It means that when I’m functioning at my best, I can pass for a normal smart person, perhaps a trifle quirky if you look close. It doesn’t really speak to the worst, though, the way I have to carefully avoid bright light or face days of migraines/a meltdown. The way I spent most of my life feeling like some sort of alien dropped onto the wrong planet (Wrong Planet, I later found out, is the name of one of the largest online autistic communities). It doesn’t speak to the days where I’m so “out to sea” that I can’t remember how to get dressed (pants go on the bottom half, shirts go up above) or how to speak to the people around me properly. “High-Functioning” says little about the way I always have social hangovers from interactions with other humans. Even when I enjoy the interaction, I always have to pay for it later. I’ve built it into my life, accepted that as part of the way I am even before diagnosis. The clinician did not recommend me for disability (that wasn’t why I went there, anyway), because I have two very important people in my life who help me make up for my shortcomings- my husband, and Susan Katz, Cake’s Editor. I was told to trust them, to go home and work on my business, to engage with the autistic community, to self-monitor my high and low times in a more intelligent fashion, and to read up.

So that’s what I did, with an enthusiasm about life that I’d not felt for a very very long time. I felt like maybe life was worth trying to live well, instead of a sentence to be endured. I felt so much anger and rage I’d been carrying around leave me. I’d tried so many ways to get rid of that anger, I knew it seeped into the rest of my life and poisoned everything, but I could never quite root it up, only cover it over. Then it was gone, replaced with a better understanding of who I am and what I have to offer and how that fits with the rest of society. We moved to the countryside, and that also had a dramatic positive effect on my health. It’s silent here, I look out over seas of treetops and hear the birds. In our old house, I remember sometimes sitting on the floor rocking and crying and not knowing why I was falling apart as the sounds of a busy city invaded my house- traffic, sirens, children screaming, neighbors looking after their lawns. Here, I can think. I can focus. My baseline anxiety levels have dropped to almost nothing.

With Susan’s input and support, I re-arranged the way we work on Cake to help me work with my strengths rather than against my weaknesses. We settled into something of a regular work-day, hammering out the new designs. I built home/family/personal care routines for morning and evening, slowly taking on more responsibilities and fitting them into the day. I found out that the Loss of Reason that had so terrified me is something called Autistic Burnout, which means an autistic person is so stressed and overloaded, they begin to lose functionality that they’ve built up. It’s like an overloaded electrical grid that has brownouts, or even blackouts. I still don’t feel like I am at the place I was before I started getting sick, in terms of functionality. Over the past year, sometimes we had to halt the work for a few days or weeks at a time so I could rest. I would never have permitted this before, but now I know that’s what I have to do and I submit. It’s taken my body and guts longer than expected to recover, as well, and I’m still working on building my physical strength and stamina to something like a 30 year old woman instead of a frail old lady.

But most importantly, I find myself in a place where I’m engaged with life. I’m taking care of my family well, taking care of myself, growing as a human being, and work doesn’t occupy the same misplaced priority that it did. I’m much more relaxed with other people, and feel more secure in myself. I think I made friends with my in-laws (that’s a big deal).  I don’t want to die any more. It’s taken a lot of work, a lot of honesty, and a lot of courage, but my relationship with my husband is as close and loving as it was when we got married. Perhaps even more so. I don’t let work dominate my evenings and weekends anymore, so I have a lot more time to spend cooking delicious food and hanging out with my little daughter. I’m not so terrified of ruining her now. If she has my proclivities, my mental architecture, no amount of self-flagellation will change that because it’s already in her blood- she just needs my love and care, maybe some of my coping mechanisms, but not my baggage.

But one thing still haunts me from that time when I was sick with “reflux.” If you’re reading this, it’s likely you read my public meltdown on a big blog, just before I disappeared from the internet. I’m not going to link to it, because the whole thing makes me feel disgusted. When I started this blog, I very deliberately created a persona of myself to use for writing, blogging, and socializing. It grew into my real-life work persona, too. I did this because long experience has taught me that most people prefer me best when I play a character of myself, than if I am actually myself. The common advice of “Just be yourself and everything will be fine, treat others as you’d like to be treated” does not apply to people like me, it seems more like a very cruel joke. StephC is an amalgamation of several characters I play, mixed and melted together so that anyone who already knew me and read my blog would still recognise “me.” I didn’t do this to be dishonest, I did this because this is the way I know to best get along in the world, to best connect with other people. (Incidentally, this is a very common Aspie woman coping mechanism called “masking.”) I worked very hard on my StephC persona, to keep my worst traits out of her while still being true to who I am as a person. I strove to be sincerely kind and helpful, while being truthful, to approach the sewing and blogging with transparency, showing my processes and inviting you into my mind. It was really useful, approaching the writing through StephC’s eyes and always looking for positive or useful techniques and ideas to post. I always feared in the back of my mind that one day I would Mess Up Bad, just like always happens. I had some little slip-ups, mostly because I tend to mirror people and that means if a person is a Jerk, they get Jerk handed right back to them, usually even if I try my hardest not to do it. Those didn’t worry me too much. I did pretty well (for me) for years.

Then some blogger wrote a week of posts about what garbage my work is, despite the fact she got a pretty decent dress out of my pattern. Big deal. Most of the time, I’d laugh that off and move on, considering her attractive dress the best kind of revenge. I couldn’t let it go, though. It galled me. Now, I put this down to my fading Reason, and being overworked. For about a month, it ate away at me. Then one afternoon, when I’d been up for several days and also had a cold on top of the attacks, I lost my restraint. That wasn’t the right thing to do, I know that. I should have left it alone, but I didn’t. I said a lot of things I’d been holding onto for a long time, a lot of resentment, and frankly quite a lot of things that had very little to do with the situation in front of me. I’m going to be very careful here, because I’m not sorry for having those thoughts and feelings. I’m sorry I let them go in such an inappropriate, unproductive, and public fashion. You shouldn’t have to see that. Not even Blogger McCuteDress deserves to have to see that.

In the weeks and, yes, months that followed, I endured a prolonged deluge of truly nasty hate-mail in my inbox, to the point where hearing my inbox alert tone set my pulse racing. I was called names, accused of sexism, racism, ageism, pretty much everything except eating babies. When I checked my website stats, I saw that my meltdown caused unprecedented traffic on my sites. Truly. Nothing, not a single good or useful or interesting thing I’d ever done had driven as much traffic as me losing my temper for an hour. This disgusted me, all of it disgusted me for a long time. I’ve been in the online sewing community enough to know how much pride is taken in what a kind and supportive community we are, and I took those numbers as a sign of exactly the opposite. I was disgusted and disillusioned. That was hate-traffic. That and the mean spirited emails that hounded me while I was already wishing to be dead gave the lie to the myth of utopia, to me. Every time I would start to write a blog post, I’d think about that and go find something better to do with my time. Why should I bother, when it’s such an effort anyway? If I wanted to be read, I’d been shown very clearly the best way to get that attention. It wasn’t through hard work or consistency, it was to be a big bratty bitch. I don’t want to be that way, though, I’m not that person except in times of extreme stress. So I left it.

I struggled with this for a long time, because I am nothing if not a sincere person. I would not dishonour you by issuing some kind of fill-in-the-blanks bullsh*t apology, as was suggested to me by several people. I also felt like my thoughts on the subject wouldn’t be heard. So I shut up and kept working. It’s only recently, in going over and over the topic that I started to understand something. In the aftermath, I felt resentful that all my hard work and helping people had been disregarded like it was nothing. An outburst like that was very out of character for me and a serious symptom of my life going completely off the rails, yet no one seemed to wonder if I was in trouble. I guess it was more fun to kick me while I was down. It seemed to be assumed by many that this enraged being was “really Steph” and somehow I’d just faked everything else for years and years. I suppose that’s partially true, but it was especially poisonous because I’d actually learned the opposite through being StephC, I’d learned to look harder for positive reactions and logical answers, to be more patient and thoughtful. I’d fed my good traits steadily through blogging and it made me a better person, made it easier to live with The Thing, because finally I found a way to connect with others- through the cloth.

And somehow, somewhere, while thinking about this, I started to turn those thoughts inside out. I thought that perhaps the way I felt let down by the community falling short of its ideals might be how I made you feel that day about me, about my work, about what I do. I let you down when I lost it, I hurt you, possibly disgusted you. I’m genuinely, from the bottom of my heart, very sorry about that. I’m sorry I hurt you, I’m sorry if I embarrassed you, I’m sorry if I disgusted you. I know this happened a while ago, but it’s been on my mind to write this ever since I had that epiphany. I needed time to find words to express these things and I also didn’t want to come out with this randomly with my hands empty and nothing to show for myself. I also realized that in the same way I felt rejected despite the hard work I’d done, I was rejecting the sewing community on the whole for the actions of a few dozen frustrated individuals. That’s not fair, not at all, and I’m sorry I carried that resentment for such a long time. You don’t deserve it.

To everyone who sent me kind wishes for good health, and lovely notes in the past year, I want to say thank you.   Your kindness meant more to me at that time than I know how to express, and was and is very much appreciated.


  1. I’m not sure I have the right words but I think this post is one of the bravest and most honest pieces I have ever read. I’m glad that you’re feeling more comfortable in your own skin and send you and your Mr and daughter much love.

    Sent from my overzealous spell checking phone! Please excuse brevity and typos.


  2. Hi there

    This is a very meaningful email.

    I am happy that you have a diagnosis and therefore, I hope, a means of coping better.

    I am working on a new WordPress website for Autism South Africa to replace their current webpages –

    I would like to put your email onto the site. Please may I have your permission.

    Thanks and regards


    passionate about sewing

    Call +27 84 870 3681

    Fax 086 553 8943


  3. Steph, you have always been one of the bravest, most honest bloggers out there. If not the most. You blew my mind when you posted this. In a good way. Thank you for sharing, as always. I wish you all the very best and it’s a reminder to me just how much of a community we sewers are, and how much we owe each other to keep this community live and caring. For people like you.

    • Thank you, over the years I’ve tried hard to dig deep and bring out what was best. Community is so important, without it we’re all alone. Well said.

  4. This is the most honest, powerful and moving blog post I have ever read. I cried for you Steph as I read it. I applaud your bravery and strength – not only in surviving all that you have had to endure throughout your life – but also for ‘going public’ and publishing your experiences. If more people where able to speak openly about experiences like this, it would help so many others – and help to remove the stigma of mental illness and other conditions.
    Sending you positive thoughts, and wishing you happiness and peace in the future.
    thank you so much for sharing.

    • I’m sorry I made you cry, but I appreciate it too. Does that make sense? The way I’ve always approached my problems (sewing or mental health etc) is to get through the hard stuff and make sense of it in a way that I can share. Something about that process takes the sting out of struggling- like maybe if I share the troubles I went through, I can help others avoid them. I hope one day we live in a world that regards mental health and mental illness in the same way we regard physical illness. Thank you for your lovely comment. :)

  5. Oh Steph, I had a feeling something was going on with you but had no idea this was the extent of it.

    My husband’s uncle had a similar “light bulb” moment when he heard a radio interview about aspergers and finally realised there might be a reason felt he never really fit in. I’m glad you now have a name for it and can move forward with your little family behind you.

    Thank you for your honesty. It must feel daunting and relieving at the same time.

    Much love to you, friend. I’ll be there lurking Cake no matter what x

    • It’s ok, Katie, I took pains to keep things quiet and private until I felt like I was on the other side and in a place to understand it all. I didn’t want to suck anyone else into my chaos, and the times I got out and did events and classes were really good for me. It’s always wonderful to teach and problem solve and be in the classroom, the work I do is like a happy place where I leave everything else at the door and we can just sew sew sew….

      Honestly, I didn’t have much time to think about publishing this, I was tired and hit the wrong button which I suppose was good because I’d probably have spent another day or two hesitating. :) Thank you.

  6. Welcome back. I look forward to your future entries. The great, the average and always the real. I look forward to ALL Of IT. It’s hard to put things out and just accept what ever you get back. Too scary for me, so kudos to you.

    • Thank you, Jeri. I’m glad you’re still around these parts. :) I have a compulsion to try the hard things and scary things, it’s that thing of not letting my world be smaller than it should be. Even with my aspie brain, I think the fear of what The Thing might be was more harmful and debilitating than the effects of my autism in my daily life, now that I understand how to better manage it.

  7. Wow–I’m both in awe of your courage in posting this, and saddened at how difficult a time you’ve had over the last year or so. I’m glad that you’re finally getting some real answers, and a community that you feel at home in. And I wish you all the best in recovering your health and energy. Also, don’t listen to the haters– I think your unique fitting system is pretty genius, and I’m very much looking forward to tackling some more of your patterns now that I can think about non maternity clothes again! (Though, the Tiramisu bodice works well for that cause, too!)

    • Hooray for new clothesies!!! I found myself in a similar situation to being post-baby this past year, with having almost no clothes that fit right. For a while, I found myself wearing half-made design experiments and stealing my husbands clothes, but over the past several months I’ve made a concentrated effort to re-wardrob-ize. I paid attention to the process, and it greatly informs the next three sewalongs we have planned. :) Thank you for your kind comment.

  8. It is hard to write because I am weeping like an idiot. Oh Steph. You have been through so much shit. I have no idea of the blow up – don’t follow many blogs – but hate mail? Pigs. Total pigs. ( not using my usual potty mouth language so I won’t be censured by my tablet but pigs is so not good enough). I’d love to know who wrote that week long bitch post so I could hijack her blog or at le ast tell her that systematically tearing someone apart only keeps pigs following your blog… I have bought terrible patterns and shrugged it off as a learning experience – i.e. learnt not to buy that person’s patterns again! And I keep buying one person’s patterns even though the PDFs are badly done cos after some hassle and redrawing I end up with a great pattern. And I have never commented publicly on them. These hate mailers are little people with little souls and I don’t blame you for your so called meltdown, I can see myself doing the same – and I’m not you – the ultra generous blogger!
    I am so glad you now know the why and have support. I am so glad that your home relationships are great again. I am so in awe of your brave honesty. And even though anger is a waste of energy and very un-zen, I am so mad at your dumb doctor and all these total bitches who apparently have no idea that their pettiness and cruelty can cause harm to others.
    I hope you can feel all the love and good energy coming at you from this little island on the other side of the planet. Hugs hugs hugs xxxxxxxxx

    • Oh! I understand but also I’m sorry I made you cry! I’m ok now, I’m more than ok, and I’m glad for everything that happened because it led to where I am now.

      The blow up was stupid, really stupid, and I should have had the sense to take myself off the internet before then. But I didn’t. Please don’t be angry at them, they don’t realise what they’re doing and I took those messages to be more about the person writing them to be about me, some of them were truly unhinged and ludicrious. (Still hurt though, but it’s over. The next hate-mailer will be doxxed….) But if we feed on anger, or we quit, they win and I just couldn’t have that. Thank you so much for your passion and kindness, I’m glad to know you Francesca.

  9. Steph, thank you for sharing this. I know you’ve been going through a lot the last while, but I didn’t realize (and maybe I didnt’t reach out as much as I could) quite how much—I’m so sorry for your pain, but I’m so very happy you’ve found new ways to understand yourself and work with yourself rather than against yourself. You have all my best wishes, and I’m so sorry I wasn’t there for you.

    • You were there for me, Taran, you were. Remember when I was being rushed to the hospital and sent you that email telling you what to do if I died or was out of action too long? You were like yup, get well soon and that put my mind at so much ease. I tried to keep as much of that time under a lock as I could, until I could sort it out and process and find something beyond it. It’s not at all your fault that I kept all this to myself, I hope you can forgive me for hanging onto it. We’ve been friends and work-buddies for a long time, and I deeply value our friendship and your excellent work. Thank you for being you, you have nothing at all to be sorry for.

  10. Wow. I am almost speechless. That was immensely brave to put yourself out there so publicly and it took courage to be so honest about a very personal situation. What you went through sounds utterly terrible and it is wonderful that you feel you are improving and are enjoying life better with your family. Well done for battling your demons! Looking forward seeing you continue to grow through your posts, and am sending you all the welll wishes in the world and strength on your journey x

    • I battle for my daughter. I wanted her to have a good mommy, and a good life, and that meant I had to sort myself out. She’s an excellent motivator. :) Thank you, Gigi, things here aren’t always perfect and sometimes they’re super weird, but we’re on the other side of the hard times and it’s a good place to be.

  11. You are remarkable, and I’m so very glad that you made it through. I’m proud of you for sharing your story, and for persisting until you got a diagnosis. How appalling that people would send you hate mail – I’m so sorry you had to go through that. Sending much love and strength to you. xxx

  12. Thanks for sharing, you are a strong and brave woman. Good luck, Best wishes, Hope to see and hear more successes!

  13. This post is beautiful, honest, raw, and eye-opening. I am glad to have read it and understand a little better who this amazing, complicated, and GOOD person that Stephanie is. I wish you and your family all the best.

  14. Words are failing me, I’m a complete muddle, and i can hardly see this screen through tears. Thank you from the bottom of my heart. You truly are a wonderfully brave woman, and this post is powerful. It resonates in many ways with me, for myself and my oldest son. You have triggered a thought in my mind that has been waiting to be let out. Thank you.

    • Oh! *hugs* It’s ok now, it’s ok. I can’t even begin to list all the excellent strategies we’ve been able to implement that make life MUCH more easy to handle. It’s been really good, and to get here we had to go through the badness. I wouldn’t wish it on my worst enemy but I’m glad it all happened, from my perspective now. If you want to talk about the thought that was triggered, feel free to email me. stephc(at)sewingcake(dot)com

  15. Wow! Goodness, you poor thing. And yet how brave to write this. I don’t really know what to say that doesn’t sound trite, and yet I want to say something, just so you know I read and tried to understand. So, I will just say that I am glad you are on the road to feeling better, that you finally understand yourself. I really do wish you and your family all the best, and I look forward to seeing Cake develop and prosper in future. xx

    • It’s ok, Helen, it’s over now. :) And thank you, I really really appreciate you taking the time to read and comment. I’ll do my best to make the best Cake possible! :)

  16. Steph, you are an amazing woman and I’m so happy to hear that things are finally turning for you in terms of your health and happiness (what an awful 2 years you have had! You poor thing! I had no idea). I think it’s incredibly brave of you to write about this. I wish nothing but the best for you and your family ♥

    • Hey Lauren- Thank you! You know, your blog is one of a small handful I kept reading when it was delivered to my inbox, I’ve really enjoyed seeing all the lovely things you make and do and watching your successes. Thank you for that, you made me want to get up and sew things. Not many people knew about what was going on, I needed to take time privately to grow and change and process.

  17. Dear Steph,
    Between my inability with words and my lack of technical understanding of WordPress, I’ve rewritten this an embarrassing number of times. LOL! But I really wanted to add my voice to the list here of folks who are standing up in support of you. If I distilled my feelings down into just two words they’d be… THANK YOU! For all your help and hard work. I am glad you found the help you needed too.

    • Ach! I think it’d be easier to not have a lack of technical understanding if they’d quit changing the interfaces all the time..! I feel you. Progress, sigh. Thanks, Hope. :)

  18. I’ve always admired you as StephC—your drive to improve patterns and make sewing approachable to women with all our different body types, your helpful instructions on how to fit things and deal with different fabrics, and your occasional sharing of what it was like dealing with depression and needing to have time to yourself—all of it.

    I worried about that woman when she stopped blogging on 3 Hours Past, but assumed it was because all your efforts were focused on Cake, and then worried a bit more when things on Cake were pretty quiet, but that is how business goes sometimes, I thought, especially small ones. Life happens.

    But wow. I admire you so much as Steph for publishing this, for coming out with the wonderful Tidepool collection as you dealt with the end of it, for battling all of this—I’m at a loss for words. The problem with the internet is that it’s so easy to send hate mail to someone you’ve never met, but it’s very difficult to send things that effectively come across as genuinely supportive when you’ve likewise never met someone in person (nor are likely to). I hope this comment can express that support in a way that you can feel, despite the distance and semi-anonymity.

    I can’t wait to see what’s next with Cake, for you, and wish you and your family all the best in this new future you’re experiencing!

    • Thank you so much. Sometimes I’d wonder what it was all about, why bother, why try, and comments like this are an excellent answer to those questions. Life does happen, life did happen, and I kept thinking “Tomorrow, I’ll write something” and then not finding any words. I felt bad for disappearing, and tried to keep my hand in a bit through social media, but I didn’t even know where to start, especially before I could stop and make sense of everything. Thank you for this comment, I feel your warmth and goodwill. And who knows? We may meet some day! :) (Sometimes I can be disappointing irl, though, recently I met socially a woman who had seen me being StephC running a fashion show a few months ago. She told me all about StephC and how much I look like her, she thought I was two different people who looked a lot alike! ;))

  19. Didn’t want to just read and run Steph. Like others, I was puzzled by your prolonged absence, and although I knew something of your physical health issues, it didn’t quite explain the lack of Cake related activity.
    Asperger’s is extremely common and most sufferers never actually get a diagnosis – hopefully that will change with greater public awareness. I know there is a big push amongst health care professionals here in the UK to change the situation.
    Now you know what you’re dealing with, I hope you will get the support you need. I wish you well, and look forward to more Cake soon x

    • Thank you, Fiona, I’m really happy to see your “face” again. You and so many other truly lovely and kind and supportive people were on my mind while I was “gone.” But every time I made any kind of post, however innocuous, it triggered more nasty emails and besides, I didn’t want to put all the scary stuff out there without having some kind of resolution, or greater truth to offer. I’ve read about the changes in the UK health system in terms of recognising and supporting autistic citizens, and I applaud it. I think you’re right, greater awareness is the key. I know for some people, Autism itself seems like the Worst Thing Ever, but honestly I was just delighted to know how to better live in the world, the ways I could trust myself, even the little hints and tips I pick up for how to communicate more productively. It’s life-changing, and vitally important to people like me, and I’m glad to live in the 21st century. :) We’ll have some sewalongs soon, I’ve been really excited about them and will get the sign-ups published soon so we can get some great sewing done together.

  20. In awe with your sharing. Thank you. I don’t have the time to say more as I’m rushing to work but felt at the very least that you should know immediately that you are respected, inspiring and supported. Sending positive thoughts your way. It’s lovely to see your return.

  21. Wow, I’m so sorry to hear about all of the hardships you’ve had to endure. I had no idea that autism could create so many physical issues. I’ve missed your presence over the past couple of years, and I’m happy to hear that you are back in a better place! I’m very excited about your new collection. Thank you for sharing.

    • Oh, yeah, it does very much affect the physical body… I might write about Sensory Processing Disorders at another time, but aside from everything else that my brain does, it can be the hardest to manage and the scariest thing to experience, but is embedded in my neural wiring. Gut and digestive issues of different types are also common for those on the spectrum, as is insomnia and lack of appropriate hunger signals- lack of sleep and lack of proper nutrition is one of the surest ways for my functionality to dip. Low muscle tone and great physical flexibility are two other very common physical attributes of autism. Thanks, Margo! :) I’m excited too, we can have a lot of fun with the new work.

  22. This has been so unbelievably brave of you to share this information. Thank you. Lots of luck and love to you and your family.

    • Thank you, Julia. I don’t feel brave, exactly, more like hoping that sharing this helps raise awareness and maybe help someone who has felt the same ways I did about myself. :)

  23. I haven’t been on your journey with you, I just came across your site a few weeks ago, liked the patterns and subscribed. Your post came out of the blue therefore but like everyone else above I wanted to tell you how moving I found it and how interesting. I’m glad you’ve found some peace and wish you all the best.

    Looking at your site again reminded me how much I liked the Cabarita so I just bought one. I hope you will feel able to blog again and look forwards to following your future work.

    • Hi Debra- Thanks for commenting, and thanks for not being scared off! :) Oooh cabarita is a nice top to wear, I think of all the Cake I make and wear, my Cabarita tops are the ones that make people ask me where I bought it. The ultimate compliment to a sewist/designer, I think… If you have any questions or issues in the sewing let me know, if you haven’t worked with the Grid Guide before it can seem really weird, but we’ve had a lot of excellent results from it. :)

  24. Steph, you have meant so much to me. I am literally wearing your custom trouser block on my butt right now. Four years ago I spent 3 lonely months doing regular life while my partner was overseas, and found sewing again. You were there from the start, your 3HoursPast blog and then Cake, and your honesty (which, persona or no, I do believe was honesty–we are not obliged to disclose every little thing) and your beautiful little girl–you were one of my first “friends” in the online sewing world.

    I was so sad to read of your gallbladder disease, and I am very sad this morning to read of your struggles with mental health, especially in the past two years. Your writing about it was beautiful and very powerful. I am grateful that you accidentally hit publish and then decided to go for it. I’m so sorry you’ve had such a hard time, and grateful that you have a diagnosis that can help you start to care for yourself better. I am also very happy for you that this has come at the beginning of your 30s, which was, for me, a truly blessed decade of becoming who I really am, and learning to love her. I think for many of us it’s a time for this kind of growth, and I think we start to have new tools for this work at this age. I hope that your journey gets easier and more bright going forward, and also hope you can love yourself even if it’s not always so.

    Thank you, and bless you, and like so many here, I don’t anticipate ever being disgusted by or turning away from you. I plan to be here, in California, caring about you. :-)

    • Thanks, R, I’m glad my blog was so helpful to you during that time. :) And hooray for pants that fit, woohoo! :D Sometimes playing the part felt dishonest, because I knew that’s what I was doing, but I always strove to write from a place of transparency and honesty and inquiry. I’m very glad that came through, because approaching life with StephC’s mindset really really helped me become a better person. Thank you so much for your lovely thoughtful comment, and YES! I love being 30. I know I’m supposed to be all sad about it or whatever, but my 20’s were scary and I’m glad they’re done, I really look forward to the future and whatever it might bring. :)

  25. Steph, you are The Awesome. I first found your blog with your post about body shapes and how women are not fruit, and I loved your voice and what you had to say, so I began following your blog. I used to sew a lot and I enjoyed reading about your process and watching your business grow. I am really proud of you for speaking out publicly about your mental illness and for sharing your difficult story with us, I can only imagine how challenging it was to write. My youngest child has been through Some Stuff and is also trangender and I feel that one of my jobs on this earth is to raise awareness about mental health and trans. There is so much ignorance and I believe this fuels hatred and bad behavior, so I am all about More Love & Less Fear.
    So, I applaud you! For persevering, for creating, for caring and for speaking out with an honest and clear voice. And I think your husband deserves a medal.

    • Oh thank you! :) Ahhhhhh, yes, women are not fruit, sometimes I want to wear nothing but t-shirts that say so with apple, banana and pear silhouetted on it.. hehe. I’m so glad your child has a parent like you, unfortunately sometimes parents push their different children away in a misplaced attempt to help them, but you seem to know that what your child needs most is your love. That’s what we all need, the most important thing. Husband does deserve a medal! I wonder if he’d think I was being snarky if I presented him with one…? ;)

  26. Oh Steph, a heartbreaking post. Thank you for your honesty, as a mother of a 10 year old son recently diagnosed high functioning as I can grasp a little bit of how you must have felt for the last 29 years. I’m so glad you have finally figured out your thing and now you can adapt your life to living it the way you need to. Women/girls appear to be very good at masking asd and it appears different to boys. Big virtual hugs from me and take care. Keep making patterns – you are a wonderful designer and majority of us love your patterns.

    • Thanks, maeve, I didn’t mean to break your heart! Tony Attwood (who created the clinic where I was diagnosed, he gives regular free group meetings which is nice) believes that autistic boys don’t particularly care/aren’t socialised to care about being social and use their intelligence to pursue math and sciences or whatever. He believes that more often than not, women on the spectrum use their intelligence to figure out how to fit in, prioritising it above other pursuits, so that being social becomes an intellectual pursuit in its own right. It’s really interesting, and difficult to tell how much of that is gendered brains, and how much is the expectations placed on little girls and boys, but it’s very fascinating. I’m glad your son can get the help and support he needs, and has a good mother who loves him enough to seek it. He’s a lucky boy.

      I will keep making patterns, so far nothing has stopped me so why quit now? ;)

  27. Wow Steph. This is an incredible story. Thank you for sharing. As you’ve already experienced the vitriol of the Internet, I can only imagine that it took extra courage to put this post out there for all to read. I’m glad you’re feeling better now.

    • Thanks, Cari. I wrote it hoping that someone out there would read it and it might help them figure out their Thing, and because I think it’s always good to chip away at stereotypes. And because I missed y’all, I missed you so hard. :) My aspie lady friends helped me get over caring about the vitriol, and again, I figure if I let that fear control me, my world is smaller than it should be…

  28. StephC., I just finished reading your post. It was difficult to absorb. You have been through a hell of a lot in the past few years, as well as the growing up years before that. The fact that you have sought out so much medical help over those years only to find the answer by a casual “google” query does not speak well for the medical profession. Your description of your “reflux” symptoms had me thinking gall bladder. I don’t know how your doctor could not have ruled out such a common medical condition. I believe that it is time for a change of general practitioners, definitely one less inclined to diagnose malingering. That is not who you want treating your family. What got to me was the rage you spoke of. I well remember that degree of emotion from my adolescent years. I ran that rage off, literally. I ran until I was spent. Fortunately for me, my hormones did not continue at those levels, much after puberty. I can empathize with your difficulties in dealing with hormonal imbalances all your life. Add to that, auditory and visual hallucinations, and I really don’t see how anyone could consistantly cope. No wonder you felt you needed to be someone else and wear a mask. Just to clarify things a little bit, I am a 60 year old woman, born and raised in Ontario Canada. I come from a dysfunctional alcoholic parents and my closest friends are my siblings. Only we know how we developed into the peoople we are today. We seldom speak about our childhoods, good or bad, because you can’t invoke one without the other. The point that I am trying to express is, that we all wear masks. I have lived long enough, observing other people, to have this fact reinforced. We try to show the persona we wigh to be perceived as. The odd thing is, this varies from one friend/ or acquaintance to another. Please keep that in your mind when you are reading the hate mail and unkind rsponses. As you well remember, “kids” can be cruel. Just because they’ve grown older, doesn’t mean they necessarily have grown kinder. However, sometimes they have. Keep these people in your heart and let the others wash over you like rain on a slicker. You have good friends, a loving family and can gevelop the skills to cope with life. You are in better shape than many Good Luck and Best Wishes. .. Karen

    Date: Mon, 29 Jun 2015 09:33:21 +0000 To:

    • Hi Karen- Thanks for writing. It was difficult to absorb at the time, sometimes I felt like life was whizzing by and I barely had time to take notice. But that’s better now. Being a kid was very hard, and honestly looking back I don’t think I did myself many favors, either. I wish I’d had more self-awareness.
      I don’t blame the doctors much, I’ve learned that the ways I was mis-treated and disregarded by doctors is very common to autistics (especially ones who can speak well), even just knowing that took the sting out of it. I do have a new doctor since moving, and when I came back for a checkup after surgery the doctor who mis-diagnosed my problems apologised. She had simply never seen a case of gall bladder disease in anyone under the age of 50, let alone someone as “skinny” as me. The entire time I was in hospital doctors and nurses remarked on it. I have a family history of the disease but no other “warning signs” in my lifestyle or diet. Everyone kept saying with a sigh “Genes will come out.”
      Thank you for sharing about your life, and about your masking. I’m so sorry you had to go through that as a kid, my mother was raised by alcoholics and I well remember her stories about it. You are right, I think at different times and for different reasons, everyone masks. In my case, I knew it was something more because different personas of mine have different ways of dressing, different makeup, different tones of voice, different posture and gait, different conversational touch-points, even different vocabularies. I even worried for a while that I had some kind of personality disorder, except I always knew exactly who I was and where I was when persona-jumping, so I kept doing it. I told myself that all the world is a stage, and we are but players upon it.
      Thank you, I really appreciate the time you took to comment, and I really like the visual of rain on a slicker. I’m going to remember that. :) I’m very grateful for what and who I have in this life, and I hope I can continue to find ways to express that gratitude.

  29. Dear Steph,
    I want to add my words of thanks and encouragement to the growing list of comments you are receiving. Talking about mental health issues is so difficult, but talking about them does help others know they are not alone. Who knows how many you will reach with this post that say, “that is me!!” and find the help that they need. I, too, had a Thing happen to me last year (funny that that was exactly what my husband named it). Not nearly as dramatic, or as lengthy as your experience, but every bit as life changing. Knowing that something really is wrong can be such a relief. Mine turned out to be Persistent Depressive Disorder, which is a mild form of depression that seems like it shouldn’t be so bad to live with, but it is chronic, and debilitating over the years. I told my psychiatrist that I felt like I had had a low grade chronic depression my entire adult life (I’m 55), and she said its not only a thing, it was my Thing. Now, like you, I just keep moving forward, paying attention to my mind and my body (and take a few meds) instead of denying, hiding or wearing the mask.

    I am so sorry about your hate mail experience… the internet can be such a mean place. All the best, Ellen

    • Hey Ellen- thank you, I really appreciate you taking the time to comment. I’m so glad you got the help you deserved, that allowed you to keep moving forward and gives you the courage to be yourself! Moving forward was my mantra last year- put one foot in front of the other, and one day I’ll get where I need to be. Yes, the internet can be mean, but really, on the whole, I’ve found more lovely, kind and intelligent people online than trolly types. :)

  30. Steph, although I subscribe to your blog, with the volume of blogs and and sewing related reading I do, combined with the general busy-ness of life, I wasn’t aware that so much was going on, both with you and with the pattern disagreements you wrote about. Although I blog, I have pulled back myself a lot as well, but for varied and completely different reasons from yours. One of the reasons I began blogging was to make more connections with the wonderful sewing community out there – for that it has been fabulous. But it saddens me greatly when I see hate anywhere, and there is a lot of it in our world today. I’m saddened by the hate I see sometimes in the sewing community. I honestly don’t see it often, but it strikes me that as women, we should be lifting each other up as much as possible, rather than the alternative. I feel bad for you that you were subject to hate by way of emails and such.
    Good for you for sharing your story. Clearly, life for you has not been served up on a silver platter, but look at what you have accomplished – despite the challenges along the way. All of us have our ‘crosses to bear’, so to speak, or our challenges in life – however you prefer to look at them. Look deeper beyond every blogger’s pretty pictures, and everyone has a story. Yes, some people have more challenges than others, some people have so many challenges it doesn’t seem fair. You’ve survived, succeeded, and managed a long time without a diagnosis or true understanding of why and what makes Steph unique. Hopefully, now that you have a diagnosis, and a better understanding, you will not just manage and cope, but truly enjoy your life with your family and continue to grow and succeed in your business. Btw, your husband sounds like a keeper. All the best to you, Steph.

    • Oh, and one more thing. The signs and symptoms of gall bladder disease are generally readily apparent. It may be time for a new doc with a fresh perspective, especially now that you are feeling healthier.

      • Thank you, Andrea. I really shared very little of this with anyone outside of my closest family, my aspie groups, and Susan. You are Right On about how it’s important to lift each other up as women, I couldn’t agree more, which is why it sickened me that people who don’t know me jumped on my moment of weakness and extrapolated all sorts of awful, untrue things about me. But it’s ok now, everything is ok, and YES about stories! I often find myself distracted wondering about other people’s stories behind the pretty photos. Thank you, I am enjoying my life and honestly the whole experience has left me feeling grateful more than anything, especially for my lovely husband. I’m even cooking up Thanksgiving dinner for family and close friends this weekend to go along with the 4th of July, since it’s cool weather here and perfect for that kind of feast. It’s been a few years since I even tried, and I’m really pleased to be “reclaiming” my favourite holiday. :)

        Yes, those symptoms usually are very apparent. I think part of the problem was that I couldn’t seem to make anyone understand how much I was hurting, until I could hardly move. I also hid it for a long time, because I wasn’t sure if it was a stress thing or a body thing. Also, gall bladder disease is really rare in women under 30 and under a particular BMI, it’s not the first place anyone’s mind went looking at me. The only person during that time who floated the idea of gallbladder disease was my long-suffering auntie who had been through it herself, though at a later point in her life. But it’s all ok now, lots of rest and building a solid workout/diet routine has done wonders to help me get strong again, though I’m still not where I’d like to be. It’s all a process. :)

  31. hey Steph, thank you for writing this account of a horrific time in your life. I am so sorry that you’ve suffered so much. And I am so glad to read that you felt at home with the group at the library, and you have a diagnosis and you moved to the country. So much good things are happening for you now. That is wonderful news. Keep on keeping on! hugs

    • Thank you, Robin! The diagnosis and the move were unrelated, but I couldn’t help but feel like I was being rewarded in some weird way for facing The Thing and putting a name to it. Sometimes, I don’t leave for weeks at a time (I order groceries online) and it’s glorious. I used to force myself to go out once or twice a week because “normal people do this,” but now I don’t place the same pressure on myself. I will keep on, thank you! :)

  32. There’s a lot I’d like to say, but I don’t think I can manage to put it all down into the proper words. I’m sorry for that, and I’m sorry for the way you’ve felt–tormented in the mystery of causes, worsening condition, and everything else as well. I’ve read this post once already, but even starting this comment I’m having to go back and forth between passages that I read and this comment box to type what I want to say. I’m glad your feeling that you deserve happiness now. You do. Every person in the world deserves happiness. It’s really unfortunate that so few people are told that, or told in a way that can be understood and absorbed.
    As a soon to be member of the healthcare profession, I feel I must apologize for the fact that it took so long to find the cause of the issues you faced. Healthcare really sucks. I say that, but perhaps I should qualify what I mean: It really sucks that the people who are there to help are just people. I’m just a person. People are so very flawed in many ways, but it means so much more in healthcare. We can’t see everything. Sometimes we never find what’s causing problems, and that hurts. It hurts everyone involved, but no one so much as the patients. I don’t know that a day when diagnosing and treating with ease will ever come, especially in mental health, with all of its complexities, or if it will ever come for that matter, and that really sucks. It isn’t fair, and it isn’t right, and I’m sorry for that. I’m sorry I can’t change that, as much as I wish I could. All I can say is what you already know, and what I hope anyone else who’s suffering from something and feels alone will see: you aren’t alone. There will always be a group of people who have and understand your problems, no matter how small the group might be, and if you can find them, you may be able to find the answers you need. Never give up hope, even if it hurts to hope. I know the feeling, and hopelessness is not a comfort to anyone, as much as it might seem to be. It’s just a hollow, dark pit, and it only makes you feel more lonely.
    I understand your worry at the idea of being put in an asylum. People don’t paint them in a pretty light, and along with all that was stated above, relating to the incompetence (though I hate to use that word, considering the difficulties of the job, but I could write a whole post about that, all going in circles, and probably never arrive anywhere besides saying that there isn’t much to do about it except remain open minded and educated) of the healthcare workers with whom you were left. I have long held a fear of “going crazy,” though that isn’t the most politically correct way for me to put it. It’s the best way I can think at the moment of explaining myself, however. It’s actually almost funny that your post showed up today, of all days, in my inbox. It seems silly the further I get from this morning, but at that time it wasn’t funny at all. I had a dream again, one I’ve had the displeasure of having before, of having gone insane. The world didn’t make sense to me, and I woke up in the worst fright. Going insane is my worst fear (I don’t really like putting that up online, but I feel like me writing a never-ending comment here may help you a little, or at least help me to get it off my chest). I don’t joke about it. I almost had another panic attack (yes, another–I can relate to that too) this morning thinking it over, and almost crying out from the misery and, above all else, fear. It doesn’t feel so bad now that some time has passed, but that feeling of being so utterly scared beyond my wits still lurks at the edge of my mind. It isn’t fun when you feel your sanity is already in a fragile state. I don’t like confusion and feeling like I’ve stepped through the looking glass into a world full of the mess isn’t pleasing, to say the least.
    I understand what you mean about the difference between wanting to die or be dead and being suicidal. Yes, there is a definite difference, and I’m ashamed they didn’t understand. Maybe they teach things differently here in the States than they do in Australia, but I hope that particular matter is made clear (for most) in both countries. I will say that nurses here must always ask if a person has a desire, plan, etc., for killing oneself if it is suspected, but even that doesn’t seem to equate itself with what the nurse told you.
    The way things are diagnosed can be a bit irritating at times. As you say with the diagnosis of “High Functioning Autism,” it doesn’t really define things appropriately. Life isn’t just a non-changing place–we’re in a constant state of change. It’s just like depression. There are a lot of different ways to be depressed, but people seem to thing it means one is always gloomy, dark and suicidal. It doesn’t occur to everyone that depressed people can still laugh at jokes, can still smile and feel happy some times, but still be depressed. At the end of the day, it’s always there to welcome you back to it’s torturous arms, even if you managed to have fun for once. If feel like that’s similar to the problem with Autism you mentioned, only backwards. People think that because one is depressed, one never leaves the Floor of the Dark Pit–one never feels an increase, however brief, in happiness or joy. As you said with Autism, it’s like the same floor, only turned around–its the ceiling, and you may fall down occasionally from being “high functioning,” and that’s okay. What’s important is that you can still climb back up and maybe find better footing this time.
    I had to laugh at your routine of putting yourself together before facing things like the meeting. I do the very same thing. It’s rather funny… I don’t know if it comes from my pride or vanity or what, but I know that if my life is coming apart at the seams and I’m doing something that’s taking a lot of strength on my part, I’m at least going to have a strong front, even if my inside resembles jelly. It kind of reminds me of the music video to “Picking Up the Pieces” (though I do loath to bring up pop culture in my references–that seems more like “Private Life Zach” than “Commenting Zach”), though it might not be the best example in the end–I really don’t know right now.
    I’m sorry to still be writing what’s turning out to be practically an entire blog post-comment to your own post, but I would like to end on a positive note and say I’m truly happy for you right now. I’m really glad you’ve found freedom and helping hands in the form of a diagnosis and a supporting community of caring people. I’m so happy to read that things are getting better, and that you can see happiness again, and you can take it. There’s just nothing like helping hand when you’re drowning.

    • Whew! Thank you so much for sharing all this, Zach. I so, so, so hear you about how the health professions are made up of people, and people make mistakes. That’s exactly right, and I don’t harbor any ill will except a kind of low-grade general dislike for doctors. I have had many amazing, helpful ones, too.

      Yes, to the fear of going crazy. It’s completely terrifying, and I’m sorry that it haunts your nightmares, too. I was lucky, though, I only stayed a night and was discharged. I know people who have been committed for months following a meltdown and experiences in the mental health system is mixed at best. I think for me, the humiliation of being treated as “less than” and being talked to like I was deaf/stupid was the worst part. I am not less than, the muttering man is not less than, the suicidal lady is not less than. We are people. Sick people, but people. I guess it was the contrast between being treated with dignity during an operation in a nearby hospital, then a few days later being treated like some kind of monster who has to be controlled with substances that particularly struck me.

      Thank you, for understanding the difference between wishing to die and being suicidal. It’s a big difference to me, but it seems like a lot of people don’t know the difference- maybe because they’ve never really felt either way. And more’s the better for them. I always liked our email exchanges back in the day, if you want to email me sometime about these things, please do. I like what you wrote about standing on the ceiling- that’s, wow, yes, exactly. The medical profession will be a better place with you there.

      I will say in defence of Australian healthcare, that despite the wrong turns in the diagnosis, I am not bankrupted by my illness and aftercare. I didn’t have to worry about how to pay for it, from surgery through to counselling. It is an amazing thing, one I’m still trying to understand, and it felt like Australia was saying to me that I mattered, and I should focus on getting better- like that is the highest priority. And it should be. That experience made me want to become a citizen, and find more ways to contribute. I don’t know if I would have even been able to afford surgery, let alone the excellent mental health care (hospital aside), had I been stateside. Though, I haven’t lived back home since Obamacare, maybe it’s better now.

      And exactly, the strong front. A sad truth of life is that most people assess and judge us before we even open our mouths to speak, and I try to use that as a tool. I used to wonder if I was vain and/or prideful, too, except I didn’t take a lot of pleasure in my appearance. It was/is more like- am I being correct? Do I look like a person? But yes, about jelly. Oh yes. Thank you Zach, I think I’ll come back and read again several more times, theres a lot to what you posted.

  33. Thank you, Steph, for writing and posting this. While I know several boys and young men with Asperger’s, I have never thought to look for it in the girls and women I meet. The list of traits you linked to have me thinking about a couple of young women that I know. I will do more reading on this to better help and understand them. I have admired you from afar for many years and am happy to know that life is moving positively forward for you. All my best.

    • Thanks, Jen. It’s very positive, I’m glad. If you mention it to the young women, they might well reject what you have to say. I’ve found that a lot of people who walk around with The Thing don’t take kindly to having it pointed out, and even a lot of Aspies seem to resent and loathe this part of themselves. For me, I guess it’s that I spent a lot of time in that pit of self-loathing, had already accepted a lot of my traits without knowing what it was, and was quite happy to leave that pit behind. For others, it’s different. They are lucky to have a friend like you who cares. :)

  34. Steph, what a heart-breaking and inspiring blog. I’ve been swamped for several months and not reading much email so knew nothing of your previous melt-down but this post made me cry. Please know that you will be in my thoughts and prayers going forward. Thank you for having the courage to write this post and I hope that it helps many of us, not only to be aware that these traits are not just personality quirk and reach out to help others, but also to remember that being kind and gently with each other is so important. It is so easy to write something and send it off, never thinking about how hurtful it can be. God bless you for your courage and grant you strength for the journey ahead of you.

    • Thank you, Marci! Don’t cry! It’s a good thing, it really turned out to be all for the best in the end. Sometimes bad things do. I really appreciate your kindness and prayers, thank you.

  35. Thank you for sharing your experiences and hardships. I am sad to hear how difficult it has been for you and then also noting that you and your family have stayed strong and the course. I cannot understand the hurtful exchanges that happen in the sewing community and for what? You have been a wonderful influence on my sewing and how to think about body image in the time I have read your blog. I was thankful to see your email this am and hope that you continue to protect your health and the wonderful bonds you have with those you love and have as support in your life. Please know your work and words are a wonderful contribution. I appreciate all that your share: your thoughts, experienced sewing lessons and whatever part of you that you choose to give.

    • Ah, well, I think a lot of times it has more to do with the people in the exchanges and what’s going on in their lives than anything else. I’m so delighted to know the ways I’ve made a difference in your sewing, thank you so much for letting me know. :)

  36. Hi Steph,

    Thank you for being so brave, and sharing your experiences with us all.

    I was diagnosed with Aspergers only las tyear – pretty late as I am older than you are. But it was such a relief to finally find out why I never felt that I fit in. The more I have read and learned about Aspergers – in particular how it presents in girls and women – the more sense everything in my life makes. I am sure you are learning that as well.

    I can also empathise with your fear of being committed. Unlike your father, who obviously wanted to help you, my father actually threatened me with that, because he was so angry that I couldn’t simply “act normal”. The truth is, you are normal, and you are sane. You just have a different way of looking at, and interacting with, the world. And the Asperger brain can be an enormous asset – just look at your innovative approach to designing patterns.

    In regard to your reflux, and other health issues – it is worth noting that there are very strong connections between Aspergers and gastrointestinal tract disorders. I am nearly to the end of a degree in dietetics, and using diet to promote health and wellness in Asperger people is of great interest to me. If you continue to have those sorts of problems, it might be worth consulting a dietitian who specialises in the GI tract. Just a thought.

    I wish you all the best….onwards and upwards!

    • Thank you, Redfyre, it’s nice to meet another aspie. That re-framing process is so powerful, I felt like I was cleaning up the messy floors in my mind palace, putting the stacks of confusing memories into boxes with labels like “Executive Mal-Function” and “Sensory Processing Disorders,” straightening everything up, sweeping the floor, opening the windows. And you’re exactly right, my autism has informed and more or less created Cake, the more I learned about autistic brains and bodies, the more I realized it. (Like, I have very pronounced tactile sensitivities, which comes out in my focus on comfort and cut-on sleeves that don’t have a seam around the arm…). I want to put together a post about that at some point, because it’s a way to understand the abilities that come part and parcel with all the rest of it.

      Yes, isn’t that interesting about the guts and brains being somehow connected? Even post-op, I have gut problems and did before I was sick-sick. I keep an eye out on research like that, because for me it makes a huge amount of sense. Through monitoring myself better, I’ve learned that when I eat more protein, my functionality stabilizes. I even quit being a vegetarian, because my body was just much healthier on meat. (Soy, dairy and legumes don’t seem to quite do it.) If I eat a lot of flour, or sugar, (ha ha, Cake. ha ha.) without also having protein, I lose functionality fast and can make myself very ill. Dairy seems to be ok, though, and I’m glad because cheese is my favourite condiment. :) I’ve considered trying the Keto diet, but it seems like my own way that’s heavy in fat and protein and leafy greens makes my body happiest, so why go to that extreme? I’m still sorting out the dietary part of it, and it’s not helped by my SPD. I have periods of being perfectly healthy where I can’t actually eat, I literally gag on everything and turn to drinking yogurt and protein drinks, and soup. Sometimes it’s stress related, sometimes it’s just the way things are. I think focusing on people with Aspergers is an excellent thing, because like you said, so much about functionality can be addressed through food, and also because for autistic people, diet requires a more holistic approach than simply paying attention to what you put in the body. Ach, listen to me nattering on about diet… I’d love to continue the conversation and maybe pick your brain if that’s ok/you’d like, feel free to email me if you want stephc (at) sewingcake (dot) com.

  37. You are very brave, Steph. Thank you so much for being so brave and honest by posting this. It is so strange reading your post and feeling that I can relate to certain things. Thank you for bringing the awareness. You are great and awesome and I’m so happy that you can now move forward in life. Wishing you the best.

    • Thanks, purple. You know, when I read your comment and checked your name, I nodded… If you feel like you want to talk to me or ask me things via email, please do. It’s stephc (at) sewingcake (dot) com.

  38. Huge hugs Steph. I thought something more was going on after such a long absence. I am glad you found out the answers to your many questions. It took a lot of courage to post this. You are very brave. I know we don’t know each other well, having just met in your Hummingbird sew along. But know that you were missed in your absence. Hugs to you, your husband and your daughter. I wish you all the best in the future.

    • Thank you, Ginger, you’re so kind. :) We have some sewalongs planned for August/September and maybe squeeze a little capsule one in before the holidays, for cute party separates… I really look forward to it. :)

  39. There has to be words, but I just want to sit quietly with you and let you know that you are marvellous, and brave, and so special, and to thank you for sharing what has obviously been a brutal and transformative part of your life. I’m not an Aspie, and can’t imagine what you have been through, but I love that you have shared it for those who are, and to send you big love for continuing on, and for doing such marvellous work. I think you are ace. xxx

    • Thank you, I feel that, sitting quietly. I will keep working, there’s little that can keep an aspie from their special interests! :)

  40. Hello Steph! It is so good to hear something from you at last. This was very real and so thought provoking. I felt a little of your pain as I was reading through many parts and rejoiced in your triumphs (like finding out what in the world is wrong with you – I know exactly how that feels). Much of the time in the past two years, I have found one thing to be especially true. You will be kicked and kicked some more and even kicked a lot more when you are down and out. When you think things can’t get worse, they do and then they get a little worser after that. There is no let up, there seems to be only a trudge through it. And I can tell you right now, it gets to you. I know exactly how you felt when you lost it and didn’t want to take the hate anymore and then you poured it all out in the worst way and can’t ever go back from it. Good gravy, I’ve been there and it’s happened a lot more frequently in the past year than I even care to admit. I know what you mean and feel by feeling disgusted with yourself and with the situation at large. I do.

    While I know it’s probably all good and great to know that I know how you’ve felt about your small business, I thought it might help just a little. Just know that you are not alone, my dear. All my best wishes for your future endeavors, whatever they may be. xx, Sunni

    • Hey Sunni! Thank you for writing this, for your frankness. I’m really sorry you’ve had to endure being kicked hard, too, I have nothing but respect for the excellent service and the hard work you do. You’re exactly right, the only thing to do is trudge through, one foot in front of the other. It does help, to know I’m not the only person who has ever felt like that, and since we have similar -ish small businesses in the same field, I can really appreciate that. Take care of you, stay strong. :)

  41. Hi Steph,

    I have been thinking about your post since I read it last night…

    Firstly and most importantly, I am really sorry about the difficult and complex times you have experienced. I am so happy and relieved that you have found some answers and I hope that through these answers you are able to build a more fulfilled and contented life. I have no professional backing to say this but I feel like our strengths and vulnerabilities are really the same thing. It is only through understanding our needs and motivations that we can try and harness these personality traits – re-channel them when they hold us back and hold on tight when they help us achieve great things.

    The internet is a weird kind of place and despite the day to day impact it has on our lives I really don’t think any of us have learnt to negotiate it effectively. I have seen you build such supportive and fun online communities through your sew alongs and your passion has been so evident. I also saw the online interaction that you discussed in your post. So unfortunate on all fronts… But if we all step back and think carefully, I believe we have all been there. Something we are passionate about is attacked and we are overtired, overworked, and vulnerable and because of this we respond in a way that is no ones best interests. It is now long ago – I hope everyone (if they even think about it anymore) sees it as an aberration at a time when you were struggling.

    Finally, I just wanted to let you know, from a business perspective I have enjoyed your customer support so much. I have not seen anyone commit as you do to make sure that everyone using your patterns ends up with a garment they can wear with pride. Thank you.

    Take care

    • Hey Maryanne- I agree! I agree so much about harnessing our personality traits, re-channeling! Thank you for understanding, and for your kindness and for taking the time to forgive me. I can’t wait to get started on some more of that customer service, seeing all the new things made up in different fabrics and bodies is by far the most fun part of the process. :)

  42. Hi Steph, you’re my hero. I read your post earlier and was blown away by the courage it must have taken you to open yourself up to share such a difficult and harrowing journey. But you have done so with integrity, honesty and humility. You are an inspiration to everyone who has had the privilege of sharing your journey and reading your amazing post. As I told you, my grandson was diagnosed with ASD 18 months ago and I truly feel that although he is non-verbal, with inspirational people like you, willing to share your experiences, you give him and other people like him a voice and his journey will be a little easier because of that. Take care of yourself and your beautiful family and please keep in touch.

    Love Jane xx

    • Thank you, Jane. Thank you so much. You have no idea how much I miss your input on fabric choices, and I’ve always thought you were a really interesting and kind person, despite occasional grouchiness when I put your fabric away too early… ;) And I still use so many methods you taught me, there’s a fair amount of your knowledge and skill that gets woven into every quilt I make, I think about you every time I do that kind of work. Your grandson will grow up with your fierce love and care, so I’m sure he’ll grow into the best version of himself with you around. Many non-verbal children go on to be able to speak just fine, too, and who knows? Maybe his first words will be a full sentence filled with sharp observations or something beautifully detailed, I’ve read about many non-verbal children beginning to talk that way. Maybe he won’t, and it’s lucky for him we live in a world of iPads that can be used to communicate easily. I keep wishing I had more of a background for doing outreach or working with autistic kids, I remember that little Aspie girl in Sewco who was a student of mine… We got along just fine, except for her compulsion to disassemble the sewing machine between classes… Hmmmmm.

  43. Wow…. Thanks for sharing what you have been dealing with. Your honesty is greatly appreciated it. I am glad that you have found out what That Thing was and have been able to heal yourself and your relationship with your husband and create a wonderful one with your daughter. I am sure that this post will help many people. Much love and good wishes.

  44. Wow. Thank you so much for sharing with us what you’ve been going through. That takes a huge amount of courage to be open when you’ve been attacked before. I relate a lot to what you wrote, albeit not to the extent that you have (thankfully) and I completely understand what you mean by wishing to be dead without actually wanting to kill yourself. I also think I know what you meant by glitches and the communication problems so maybe I should look into the reason for myself. Anyway, I wish you the best and I’m looking forward to using your new patterns.

  45. Oh lovey. I am so glad you’re out the other side of this awful business and have got your mojo and your love of life back. I do know what it is like to get the run around from medical people who don’t seem to be able to get to the bottom of anything after their first guess. You are a testament to perseverance and tenacity!

  46. Steph, just wanted to say how incredibly brave and humble you are to share this with us, and how brave you are to still be here. I have no way to relate to what you’ve been through but I do understand how awful it is to have something wrong that nobody can identify.
    All the comments above say the things I thought reading this post much better than I could manage, so just wanted to say I am so glad for you that you have found an answer and a way ahead, with a smile.
    Keep going forward with strength

  47. Wow I am so speechless. To think that the Red Velvet dress pattern that I have but haven’t quiet found the right time to sew, comes with so much emotion it makes me appreciate it even more. Mental illness can be so devastating and so very hard to diagnose as it comes with so many masks and add to that is the complexity of just life itself in today’s society. I do worry that the haters are taking over the world, the nasty shit that my teenagers have gone through at school I cannot even begin to undeerstand. Perhaps it’s easier to be angry than to own your own actions. Your post is so brave and so heart wrenching at the same time, you are lucky to have such an understanding husband who stood by you. You know what though, we are all weird in our own way, we just need to find our little happy place in the world and fill it with things that make us feel good. Some people spend a lifetime loooking, but it sounds like you are well on your way to knowing where that is for you and then you will have a life time to enjoy it :) Be well xx

  48. You are amazingly brave to have posted this. I don’t know you personally, but I read your posts every once in a while and like your patterns, and I’m glad that you’re feeling a lot better and happier now that you can make sense of things.
    Also, thank you so much for linking to that list of symptoms and personality traits. I actually recognized myself in a lot of those things, and while for me things are definitely a lot milder than what you describe, and nowadays I don’t experience too many problems with that (I have developed a lot of what you call “coping mechanisms” since early adulthood), it still feels like a great relief to have things click into place in my mind and have a probable name and rationale for quite a number of things in my life.
    And finding people from the same “planet” is brilliant (in the last few years I have found great friends and a wonderful future husband with personality traits similar to mine, and it has made a huge difference in how comfortable, relaxed and happy I am).

  49. THANK YOU for sharing your story with us. I think it is so difficult for readers to realize that what they see on blogs, while true and honest, is only a sliver of the person blogging. Everyone has lives full of mess, sorrow, difficulties, and pasts that add baggage. If only all of us would keep that in mind when we read! I blog a little, sporadically, so I see both sides. I want to put myself out there for others to relate to, but it is hard to decide what is the right amount. Bearing your soul on the internet can be a dangerous thing! Again, thank you. Although I do not have Aspergers, I have suffered with anxiety, depression, self doubt, and a host of other issues that are probably pretty common, but when I am in the midst of them they seem overwhelming and insurmountable. At the end of the day, no matter how talented, or interesting, or amazing someone seems to us as readers, it would behoove us to remember that the someone is still just human.

    • How incredibly brave and strong you are. Though you might not feel that you are, I can honestly say that you are. Though I do not have the same problems as you, I can relate to how difficult it truly is to overcome any issue. The daily struggles can feel overwhelming. But having a name, and knowing what it is, and how it manifests in your life is one of the most freeing aspects. This makes me want to support you that much more. Good luck to you! Keep going forward!

  50. This is really beautiful, Steph, and is a great reminder that we should ALWAYS try to have empathy for others and give them the benefit of the doubt instead of letting ourselves believe the stories we’ve created in our own minds. I hope that anyone who was initially hurt will give you a second chance, because we all deserve them. I wish you the best of luck with the business and your personal life.

  51. Stephanie, you are both brave and humble. While my heart ached for you as I witnessed the unfolding (and fallout) of the online event you mentioned, I am so grateful to know that you have found the missing piece of the puzzle and are healthier because of it. I do hope that you find the sewing community to be kinder than it appeared at that time. Sending you love and hope for all good things.

  52. Thank you so much for sharing your story Steph. As the public part of the story hit the “airwaves”, I was saddened and irritated by the vehement insistence on keeping the controversy going. I backed away from all blogs, posts, etc having any connection at all. Doing that allowed me to keep my corner of the sewing community safe from controversy-god knows I have enough in my life without intentionally adding to it. So, I appreciate and accept your apology.

    I am very happy that you have clicked some of your puzzle pieces together and have a roadmap for maintaining good mental health. I have my own issues, and can relate to parts of your well described journey. Though I have been distant from Cake for awhile, I have been thinking of you, and recently worried about you! So happy to see your post!!

    Finally, I taught middle school science for 30 years, and have a good understanding of Asperger’s or Autism I. I wish you the best dear Steph.

  53. Your post has brought tears to my eyes. You are a blessing to the world and I hope you can feel that for yourself. Your vulnerability and honesty are truly inspiring. I’m glad that you are doing better. I hope you can continue to cultivate the amazing things that your particular way of being in the world allow you and only you to do. I have always loved your patterns and posts and I have nothing but personal and professional respect for you and Cake Patterns. I’m glad you’re “back!” :)

  54. Thank you for allowing us a very intimate peek into your life. I applaud your courage and I wish you and your loved ones the very best.

  55. I have a 10yr old daughter who since the new “bible” has come out has been able to be diagnosed with a few of the conditions that contribute to autism diagnosis, but she has not been diagnosed with autism. It took me 7yrs of knowing something was wrong and searching for answers. She has the meltdowns (only at home so the school don’t believe me), when she was going through the “terrible twos she would hold her breath til she turned blue, co-ordination sucks – used to fall over air every day. She used to ask me the same question about 10 times over and I would answer it every time but she just wouldn’t get it. He processing speed is in the 4th percentile so it takes a while for things to sink in, however spatial recognition is in the 87th percentile. The school just don’t get it, they gave discussed “life skills” classes for when she is older, I have told them she is not dumb. It’s hard. She is messy when eating, when dressing. She appears disorganised in some things but others have to get done in a particular way. You blog entry has been for me an interesting insight into how she views the world but at this stage is unable to articulate well to us. We have a wonderful speech therapist to help with comprehension and social skills strategies that has been working with her since she was 4, a psychologist for about 2 years who helps with resilience and social skills and OT who is helping with her developmental co ordination disorder. Pilates has also made a huge difference to co ordination and core stability. The biggest help has been National Disability Insurance Scheme (NDIS) for which I am in one of the trial sites. It has provided the funding and meant I have been able to keep the providers that have helped her. Look out for when it becomes available in your area, it shouldn’t be too far of. Also if you have any inkling your daughter may have same diagnosis get on to it ASAP. I am sure you can appreciate how much easier it would have been for you if you had a diagnosis earlier. My biggest hurdle has been school, my daughter is not disruptive in class therefore not something they want to invest time in. Best of luck.

  56. Wow. Well done for getting this out. I don’t know you and I know nothing of your ‘losing it’ but I wanted to say I have always found honesty and integrity in your blog and in the patterns I have used and bought. I have so much respect for what you do, and wish you all the very best in dealing with the knowledge you now have. And don’t forget, illness or no illness, some people can be so rude and inconsiderate they bring out the absolute worst in all of us, we have all had those moments and we all struggle to reconcile them with the person we know we are. Take care Kx

  57. Hi, I rarely comment on all the blogs I read because I’m a little shy. But I just had to write to tell you that you are one of my favorite pattern designers. Your Tiramisu dress was one of the first patterns I tried as I’ve been learning to sew, and making it successfully was a wonderful experience. Thank you. I think you are super cool.
    Your post is very touching and inspiring. I was diagnosed with ADD as an adult. Though I no longer take treatment for it, understanding and naming the particular way I’d struggled has been a great relief. I guess I’m just trying to say that I hear you.
    Congratulations on your breakthrough, and congratulations for being a brave and strong enough person to share it. I’m going to support you by buying a pattern right now because I love your work! Thank you, Meg

  58. I’m so happy to hear that things are on the up and up for you. I hope you can continue to build on your many strengths now that you understand this part of yourself a bit better. And, I want to thank you for sharing what you learned about autism in women.

  59. I don’t have the foggiest clue about your “public blowout”, but I’ve missed you – or at least StephC, since you say that’s not quite “you” and I don’t have the privilege of your personal acquaintance. Frankly, you’re not the only blogger that disappeared this last year or so, I figured what with Cake, you’d just gotten too busy to chatter at us.

    Reading this … I’m so sorry. What a terrible trial. Wonderful that you have found the road to health and wholeness, horrible the rocks along the way.

    Prayers have been sent, and will continue to be.

  60. This such an inspiring and brave post. Thank you. It gives me new perspective on helping some loved ones in my life. Please keep moving towards a happier you.

  61. Glad to see you back! Sewing blogs are not the same without you! Honestly, I had the most fun with the different houses of the sew alongs! And who could forget pieces of cake! Talk about holiday anticipation!
    So glad you’re doing better! I hope things continue to improve for you and your family. Thanks for sharing your story with such honesty. I think that is part of the stigma surrounding mental health issues is that people don’t always talk about them, and ignorance can make people afraid or, well, just plain ignorant. This is just as much of a disease as pancreatitis, asthma, or congestive heart failure.
    I’m looking forward to what’s coming next!!

  62. Steph, wow. Any comment will be vastly inadequate. I’m sorry you have gone through all this, but I’m glad for you that there is a diagnosis that makes sense to you. I’ve been worried about you and your absence, and I hope that in being back and owning this in such a bravely public way, you continue in good health.

  63. Thank you Steph for your kindness, honesty and courage in sharing your story with us. Stay in good health and enjoy your family and support as you supported me to learn to enjoy sewing again with your fun, functional and stylish designs for which I am very grateful. You have contributed so much to your communities and am so happy to see you are back.

  64. Thank you so much for sharing this! I’m glad that you were able to finally get the help you needed, and that you’ve found a way to run your business in a way that’s healthier for you. It’s awful that you were suffering for so long. I’m looking forward to seeing what’s next for cake!

  65. Lots of love, Steph! I’m so glad you are at a point where you’re feeling better. I’ve really appreciated the information you’ve shared on your blog, and with Cake Patterns. You have a unique perspective and it’s helped me more intuitively understand how sewing works, going from 2-D to 3-D. :)

  66. It’s hard to know where to start. I’ve admired your patterns, your approach to design, and the enormous amount of thought and work you have put into your creations. My wish list of your patterns will be my reward for meeting a few goals. I found you during your time of being away from your blog, so I had no idea of the trials that you’ve described above. I’m truly stunned at what you’ve had to endure, and what you’ve accomplished despite your challenges. Is it allowed for an unknown older lady on the other side of the world to be proud of you? Does that intrude too much? I hope not. I am so glad that you have found some peace and joy, and have figured out how to make your life work. I wish for you and your family all good things.

  67. I sent you a message already (and I’ll be responding right quick!), but I just wanted to send you another big hug! <3

  68. Wishing you well and admiring your courage. You will find in your quest to do the best for your daughter, your husband and the people you love fiercely you will become the best version of yourself. You are an admireable spirit. 😊

  69. Lovely to see you back and in better form and on the path to self-knowledge and healing. You have been to Hell and back and the future looks so much brighter. Much success to you and blessings to your family.

  70. You absolutely won’t believe this but I swear it’s absolutely true – what did I wear today ? What? Only the very first pattern you ever made – the kimono wrap cardigan! Really…. and I was asked twice where I bought it. Remember the hollowed out volcano and the ballerina look I wanted? You provided.
    The rough with the smooth StephC. I like Vogue patterns but not every single one they produce. I have a sewing friend who only sews Tilly & the Buttons – for me, I couldn’t see Tilly far enough – but hey, such is the world and we are all individual with our own likes and dislikes and that’s what makes the world a very interesting place to be within. So I’m glad you decided to stay.

    Every year I have a few autistic students in my classes and I love them – they are the true individuals and I have called them the Black & White Autistics- a totally unscientific and without peer review classification but a useful denomination – there are no grey areas – it’s right or wrong, it’s legal or illegal, they like it or they do not. Simple.

    Embrace your individuality. That’s probably where your creativity comes from. Without it I wouldn’t be wearing one of the most useful items in my wardrobe!

  71. Thank you for being so sincere by writing this post. I didn’t know of any drama that occurred (I guess I’m not that into the sewing blogger loop?); all I knew was that you got very sick but hoped that you would come back. I’m so glad you got a diagnosis and are now able to understand yourself and life better. I can’t say that I have the same thing at all, but when I figured out that I was an introvert, I understood why I acted the way I was and why people treated me differently. It was quite relieving to find that out, and I hope I can sympathize with what you went through. Welcome back! :)

  72. This is such a brave statement. I am glad you shared such a private struggle. I wish you well and will continue to follow your success with the Cake Patterns.

  73. I can’t speak for anyone but myself Steph, but I did suspect mental health problems when you lashed out over Debbie’s review. I don’t doubt for one single nanosecond that the hate mail must have been wounding beyond words. But I hoped for the best for you and certainly did not send hate mail. I wish you well now, and have just placed an order for the Endeavour Trousers.

  74. oh Steph. I have family and friends on the spectrum. I am so glad you stuck with it to get a good diagnosis and figure out how to support your mental health. For you and your family and friends, of course – but also just from the purely selfish point of view of ‘me wanting to sew great clothes’!

    The brain is just another part of the body. When it is not healthy the misery it can generate is almost beyond belief. I’ve had my own share of depression and i would not wish it on anyone. Stick with what works for you to keep your noggin and your spirit on a healthy path.

    On a lighter note, you may enjoy a bumper sticker which always makes me laugh: “Don’t believe everything you think”.

    Big Hug!!!!!! stephQ

  75. Thank you so much for posting this. I don’t have much to say that hasn’t already been said, but I wanted to let you know that what you have posted very much resonates with me and gives me hope that maybe there is an answer to “me” and that I might not be alone.

  76. That took a lot of courage to post. I’m glad it we got the unexpurgated version – I could sense the real, sincere you coming through. I have no doubt that you have helped a great many people by sharing your story. Please continue to share your story with us. Hugs, Melissa

  77. Hi again Steph – yesterday on NZ’s National radio a guy was talking about his new book about Quirky Kids, and he addressed the issue of girls on the spectrum. He said that girls are often not diagnosed for ten years after boys are, because hey seem to be better at mimicking (his word) socially acceptable behaviours from other girls. I found this so sad – our young women already subjugating themselves to fit in and internalising their upsets and confusion. Hopefully with more information out there, things will get better for them too, and they don’t have to wait until they are nearly 30 to find answers.
    Kia kaha xoxo

  78. Even though I only know you virtually, I feel glad for you to find a good diagnosis and a new path for coping. There is no family anywhere that hasn’t wrestled with mental pain and suffering, and the individuals most painfully affected suffer the most. I wish you the very best and hope you are celebrating the community you have created; I and many others have so enjoyed learning from your design process and then from your patterns!

    If I knew, I would tell you why one negative comment can be so deeply hurtful–I am a retired newspaper journalist–but the statistics don’t explain it either. One of my editors used to wonder, how can 99,000 happy readers be ignored when one stinker writes a blistering nasty letter??? No data supported answers, I’m afraid; my own theory is that some people need to project venom onto other people. They can’t help it, but their victims can learn to give them less power. I like to think of the 99,000 readers who appreciated my work and contributions to their voting lives and in other ways. Some even told me, and I treasure their letters. If I could improve my work using the venomites’ comments, I did. You are already doing that. You get the badge of courage, partly expressed by the mother of food journalist Clementine Paddleford as advice to her courageous daughter: “Never grow a wishbone when you need a backbone.” I love to remember that and brace my own backbone to answer life’s challenges better, especially the most difficult ones.

    My best wishes to you for continuing strength and improving health. You have already been through the worst, I hope, and I celebrate for your husband and daughter too. I missed you when you were away, and hope for no more such suffering.
    Kristina Replogle Sullivan

  79. Steph, thank you for sharing so much. I’m so sorry that you’ve gone through so much to get to your breakthrough. I understand the distinction between wanting to cease living and being suicidal, but I’m not sure that I would have really understood it until I felt that way (I don’t feel that way anymore). It is incredibly frustrating to express how you’re feeling and have the people around you twist your words into their own interpretation. I just wanted to scream, “Hey! Listen to me! You’re missing the point!” It’s also challenging to learn the hard way that medical professionals all have their strengths and weaknesses, like everybody else. The first time I met with my psychiatrist I felt infinitely worse about everything and lost all the progress I’d made on my own. I went into my second meeting prepared to fire her. Now I know that I can have very productive conversations with her about my medications and anything clinical, but I save the deeper conversations about feelings for my counselor. I also didn’t realize how many people I know have struggled with mental health issues or misdiagnosed health issues in general until I started talking to friends about what I was going through, so REALLY kudos to you for sharing so much with the internet. It really is brave, and it will help someone. I don’t mean to make my comment about me, but I guess I just wanted to say that I understand some parts of what you’ve been through. I’m glad things are looking up for you, and you seem really positive about your life right now.

    On another note, I want to say that I’ve had nothing but warm feelings for you regarding your blog posts, sewing patterns, sewalongs, pinterest boards, etc., and I use your invisible zip tutorial every single time I sew an invisible zip (it’s really helpful!). You’ve given a lot of gifts to the sewing community, and those don’t go away. I don’t know much about your blowup, but I think the things we feel we need to apologize for fade away over time and the gifts remain. Sending love from Florida.

  80. Dear Steph, thank you so much for your post. It was just…so…brave. I’m glad you accidentally hit publish instead of edit because it really needed to be told in it’s entirety. Without trying to hijack your experiences, I think there are many feelings that you describe that many people can relate to, though it’s hard enough to admit it to ourselves, let alone the whole world wide webs. Thank you for speaking up.
    With regards to the designer-bashing and “hate mail” that you received–it’s embarassing that sometimes grown men and women will use the faceless internet as a place to act like the worst bully meangirl. The best response I’ve read to that comes from Heather Lou of Closet Case Files who said something like (I’m paraphrasing, she says is WAAAAY better): when you want to trash someone’s work, remember there’s a person on the other end of it who is putting their entire being into it. And those people have feelings.
    By the way, your designs are wonderful and your concepts are brilliant. Don’t ever stop!

  81. Oh, honey! I had missed you, over the past year. I am so in awe of your bravery, your self-honesty, your sheer will to live. This was a very moving read. It takes real self-knowledge to fight for what you know your own mind and body are telling you, especially when you are arguing with the medical establishment. They know a lot, but they don’t know everything. More than half the time they are guessing as much as are the rest of us.

    And now that you have opened yourself to your bigger family, your chosen family (not necessarily always the family into which you are born), we can all breathe a big sigh of relief that you are still with us. Your husband and child rejoice that you are still there with them.

    How lovely to finally have a diagnosis that fits! Even if it is not a “good” diagnosis, I find that having an answer is immeasurably comforting. With a diagnosis, you can make a plan. With a diagnosis, you know what to expect. I am so pleased for you that you have found a community near you; of persons who are dealing with the same life situation, who can support you as the dear person you are, as you also support them.

    You ARE clever, you ARE imaginative, you DO have great worth to humanity. Love to your family as well, from this little corner of the world.

  82. Hey there. The silences when you want to say so much, but it won’t verbalise except as trite cliches, and you feel terrible and bothersome. That silence is where I’m at. Big post. I’m so glad you are in the space of being helped, and being okay with trying to put the mask down. You must be so tired. I’ve never felt let down by you, or your words or actions. I’ve got no time for people who hate, though we’re told so often it’s normal and okay. I laughed/ sadded (that is my word, not crying but feeling) sometimes reading the problems you’ve gone through, knowing the discomfort, the fallout, the loooong term effects. I completely get the difference between wanting to not be there an suicide. Silences again. It’s going to be okay. I’m putting a metaphorical cup of tea on the table, leaving the room without making eye contact, and being with you while you drink the tea, or not (I’m pretty sure you understand the feelings I’m getting at by saying this).

  83. I was in my 30s the first time someone suggested I had Asperger’s, or was on the spectrum.
    I am so sorry that your experience with being diagnosed was so traumatic. I don’t know you, but I cannot imagine that you deserved that. It seems like you’re on the other side, and things are better, but that doesn’t mean it was acceptable.
    I found it a huge relief to understand that yes, I am different, and yes, my brain is different. Even better, we’re not alone, and there are people who will understand us. As much as I have a hard time with people, its comforting to know that I can be understood by someone.
    I hope things continue to get better as you and your loved ones understand better and better.
    While I’ve hated being different many many times in my life, I’ve learned something else: my differences have allowed me to do things that not everyone gets to do. It seems like its the same for you. You have a business, and create patterns that people love. Our differences may make life harder sometimes, but it can also make life better. I know I can’t always focus on the “happy side”, but its good to remember that it exists.
    Take care,

  84. I realise it’s been a few weeks since you wrote this, but I feel compelled to answer. I can’t believe you went through so much mentally in just a couple years. Wow. Thank you for sharing.
    So much of what you said sounded so familiar to me. I’m not Aspie, but have a friend who is so I have researched it. I’m battling my own brain with depression and anxiety. After nearly three years of treatment I don’t feel I’ve made as much progress as you. Good for you.

  85. Hi I read your post as an avid reader of Closet case files blog. ( she linked to your post ) My 4 year old son was diagnosed with Autism in April. He didn’t speak until he was 3.5 years. He is the brightest smartest child I know. We are really learning what Autism is .The more I learn the more I think I have Aspergers too. Your post has really struck me deeply. I wish you luck and happiness for your future. I hope you can come to terms with things and your diagnosis. I am wondering if I should seek a diagnosis.

  86. Thank you for posting such a brave account of your struggles recently. I am so sorry you had to go through such a difficult time, and at the same time incredibly pleased for you that you now have a name for The Thing which helps you to be part of a community and to better understand yourself. Your insights are incredibly helpful, so I thank you for posting this.

  87. Lovely written Steph. I was worried when you disappeared from the face of the blogosphere. You are truthfully my biggest sewing inspiration, I love your designs and how helpful you’ve always been and your seemingly bubbly personality. Your story hits me very close to home and I just wanted to thank you for sharing.

    All the best to you and yours,

  88. You may never read this, I am swamped by all the great comments you are receiving, but, this is for if you do. You have been walking a long and difficult path but, you have brought much hope and comfort to many by putting your words out. I have a child who is an Aspie. I see the daily struggles and wish I knew what was going on in his brain and I wish I knew how to help. Your writing has helped me and my family tremendously by giving this insight. This is one of the wonderful things you are accomplishing, your post is a step towards understanding and acceptance of people who are ” a bit different”. When we get honest we realize that no one is “normal” and we all show the acceptable side . You are being brave and honest. Never worry about cruel strangers, they are usually unhappy people who want to make others as miserable as they are. Losing your temper once in a while is a good thing, it keeps others from walking on you. Your daughter is a very lucky girl. She has a Mother who is not afraid of honesty and she will learn from your example. Keep taking care of yourself and your family. Even though I haven’t read your blog before, you have gained another fan. Thank-you for writing this.

  89. I am not sure I can really add anything that all these commenters haven’t already but your post just resonated with me so much. When I finally received a diagnosis that fit my lived experiences (along with all the terminology that went along with it from online communities) it really did feel like snuggling in to a home made cosy jacket – sounds strange but I think you might understand what I mean. My mental health condition is what has held me back from ever starting a sewing blog as I really don’t think I’d be able to keep up the almost required happy clappy community feeling and what your community refers to as masking is a behaviour I have tried to unlearn as it made me feel worse. The honesty in your post though has been truly inspirational and I hope you feel somewhat lighter to have unloaded. Solidarity and all the best to you and your family xxx

  90. you’ve survived a physical/emotional/kinda existential hurricane. actually, it sounds like you’ve weathered a few of them, back-to-back-to-back. for years. i can’t imagine the energy it required to keep your head above water, especially while running a business and being a mom. i’m so glad for you that you’ve gotten through the dark muck to some clarity, and i wish you well as you continue to rebuild.

  91. Hi, We don’t know each other at all, but as a fellow patternmaker I have been following your patterns since the beginning. I had no idea of all the personal issues going on in the background and I am amazed at how you kept it together. I would have never guessed! I know first hand how hard it can be to shake those negative on-line comments and what it’s like to go over them in your head again and again. I also know what it’s like to reply in a way you’re not proud of, but we are human after all and words can hurt. I wish you and your family peace and I hope your health continues to improve with your diagnosis. Best of luck with everything in the future.

  92. Oh Steph, thank you for sharing this. I understand much more of your story than I can convey online. Bless you as you navigate this strange planet! It gives me so much hope for a few dear friends who do not have the relief and diagnosis that you finally found. I am so happy that you are finding the help, balance and wholeness you need. You have an incredible mind and heart–we are fortunate to get a peak into them, however it comes in your work or blogging. It’s pure gold!

  93. I’m not sure I know exactly what I want to say except that I think you may be one of the bravest women I’ve encoutered online. Thank you for your honesty and for sharing. I am so sorry that no one reached out to you and asked if you were okay. I am glad that you have finally found a diagnosis and I wish you nothing but joy and happiness.

  94. I’m glad you shared this. Sounds similar to someone I know. I do think most of us were designed to live much simpler lives than we do. Glad you were able to move to the countryside, and recuperate there.

    A while back I read a book written by a pastor. He wrote about many types of troubles and assigned a number to each. He thought no-one could take over a certain number of points within a twelve month span without risking their mental health. Just know that those of us who’ve seen meltdowns, nearly gone there ourselves, witnessed burnout, etc, we are not going to judge you for a temporary lapse into the abyss.
    If you are wanting to turn to Christ, but simply aren’t sure how, remember the ‘help thou mine unbelief’ prayer? You really can pray for anything.
    All the best

  95. Wow, Steph, I’m coming across this very late, only because I was thinking it had been ages since I’d seen anything from Cake and went hunting for you! I hope you are able to keep building Cake patterns, but only if it works for you and your family. I think your unique take on sewing patterns is a gift to the sewing world and it’s fascinating to know that it’s come from a specific type of mind. Wishing you health, happiness and non-irritating clothing :)

  96. hi Steph. i am glad you sorted out your thing. it is important. you are going to be much stronger now that you know what is going on in your life. i had ‘a thing’ from the age of 13. debilitating headaches. i spend hours at doctors and specialists to find out what is wrong with me. i never agreed with any of them. i gave up and just live with it. it changed my personality, it deteriorated my eyesite. about 10 years ago i started doing research on the internet, just like you, and found a different kind of specialist to visit. i was diagnosed with a hormonal imbalance in the brain and very mild epilepsy. do you know the kind of rage i had… all the medication i was given to take for conditions i did not have… i am glad i had the sense to just stop it all one day. now i take the correct medication and i don’t have any headaches. i am a new person. unlike you i decided not to have children, because i could not see myself go through a pregnancy with these kinds of headaches,,, i am glad we are both better and stronger now that we know what is going on. YOU GO GIRL!!!! REST AND STAY STRONG

  97. Hi Steph
    I came across your blog after googling about the ‘golden ratio’ and finding your post on that. Thank you.
    Then I wanted to know more about you and found this post.
    I too am a high functioning Aspie. Self-diagnosed (using the online questionnaire which is available). It was SUCH a relief to me to finally be able to put a label on my oddness.
    I’m off to check out Wrong Planet – thank you for that too, but I will be back to check out more of your posts if you don’t mind?
    Thank you so much for your bravery and honesty.
    Janet Kennedy

  98. I just saw this. Three years late. Thank you for your transparency. I missed a lot during my own life changes and wondered where you had gone and hoped you were well. You have done so much to create positive change in my life. I am referring to your thoughts about color and golden ratios in a talk I am giving this weekend about being glorious women and dressing well. Your patterns are brilliant and I refer to them in my classes. I am glad you have found a diagnosis and help. You have impacted the world for the better. Keep fighting the good fight!

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