Married, happy, autistic: My life as an adult with Autism #Identity#autism#disability#marriage October 22 2015 | Guest post by Minerva Siegel Autism is ausome pillow by Etsy seller Davs So much information about autism and the Autism Awareness Movement is geared toward young children. News flash: adults have autism, too. I'm one of them. "But you seem so 'normal,' and you're married! You can't have autism!" Exclamations like these always follow whenever I tell people that I'm autistic. It's true: I probably don't fit into your idea of what it means to be autistic — I'm married, I had a career before I was diagnosed with a bone disease that ended it — but it's something that affects me every moment of every day. I think in layers, and constantly have between three and five inner dialogues going on at once on different subjects. And my brain doesn't filter out stimuli like it does for the rest of the population. This means that I'm very easily overstimulated. For instance, if I'm grocery shopping and music is playing through the store's sound system, I hear and process every word said; my brain can't make it background noise. This, combined with the bright fluorescent lights and the constant levels of inner dialogue I have going on at any given time, sometimes makes me overwhelmed and irritable. As a child, I'd have tantrums whenever I went out because I couldn't take being bombarded by the constant stimuli that my brain was processing instead of filtering. I also had a horrible speech impediment, and didn't make eye contact with people when conversing. My volume fluctuated wildly, and I spoke, both, with a lisp, and far too quickly to be understood. After years of speech therapy and time working with therapists and psychiatrists to develop an inclination for eye contact, I began to seem more "normal" to other people. It was around fifth grade that I learned to force myself to limit my vocabulary and add "like" and "um" into my vernacular, like the other children did. I still find myself automatically translating things from the advanced, complex way I think, into a simplified, modern way of speaking. Along with my Autism comes a learning disability in math as well as an inability to read maps. I can easily comprehend highly advanced abstract astronomic and micro concepts, pertaining to things like quantum physics. I'm extremely intelligent and gifted when it comes to all things language, and am fluent in French. But I can't add or subtract even single-digit numbers to this day, despite years and years of flashcards and private tutoring. Related Post How can we explain his brother's autism to our four-year-old son? My stepson, A, is 11 and autistic, and my younger son, M, is four. M has just started to question why A isn't "like his... Read more Now, I'm on medication that helps manage some of the unpleasant symptoms of my autism, like irritability, panic attacks, OCD, and ADHD. To most people, I seem a bit quirky, idiosyncratic or eccentric, but overall "normal." No one guesses that I have autism unless they really get to know me, and, even then, it hasn't been a very big deal to anyone. A few years ago, I was so worried about telling my then-boyfriend (now-husband) that I have autism. Our relationship was serious and we were living together at the time. He knew that I took medication for mental health problems, but I'd never told him about my actual diagnoses. In the end, it was he who mentioned it before I did. He'd found an article online about autism and thought it described me perfectly, and approached me with it. I admitted it to him then. Rather than being scared off by this news, he shrugged it off. "Having labels like 'autism' and 'ADHD' don't change who you are," he'd said, "they just describe you and help me to understand you better. Plus, I've already fallen in love with you." If someone gave me the choice right now to take away my autism, I wouldn't do it. I'm happy. We were married in Vegas a few months later. There are so many different levels of autism. I'm considered high-functioning, though I struggle everyday to fit in to a world that isn't made with me and my needs in mind. So much literature on autism is geared only towards parents of small children with autism; those of us who are adults with it rarely get mentioned, but we exist. There's life after an autism diagnosis, and even though it presents a lot of unique challenges, it's possible to live a fulfilling and beautiful life with it. I don't see it as some horrible thing to be fixed — it's part of who I am. I love my colorful, vivid mind, intense imagination, fierce intellect, and rather impressive inclination to excel in all language-related endeavors. If someone gave me the choice right now to take away my autism, I wouldn't do it. I'm happy. I'm perfect just the way I am; I don't need to change, the world just needs to expand its understanding and accept people with autism as unique individuals with just as many useful gifts as challenges. Reporter Name * Reporter Email * Original text Enter the original text here. Edited text* Enter your suggested copyedit here. Notes You can add a note for the editor here. * Required information. Fix Typo Guest post written by Minerva Siegel I'm a body-positive activist living in Milwaukee, WI with my husband and our two silly, rescued dachshunds, Rumpelstiltskin and Ursula. You can find me on IG @spookyfatbabe! http://www.spookyfatbabe.blogspot.com PREVIOUS How to make your own Borax-free laundry soap NEXT What is "home" to you? Show/Hide comments [ 33 ] Thanks for sharing! 10 agree Reply As a parent with a child with autism, I am glad that more adults are telling their stories. I want her to have a life that is good for her in her own quirky way and knowing that others are doing so is inspiring as a parent. Thank you for sharing! 11 agree Reply This is so wonderfully written. I've never been able to describe how my daughter processes the world around her clearly to other people. Or how autism or sensory processing disorder are just descriptions not illnesses. I love this —>"they just describe you and help me to understand you better. Plus, I've already fallen in love with you." You're husband is a pretty wise dude. 12 agree Reply That's pretty much what I told my husband when our son was being evaluated by early intervention and we were looking at a possible ASD diagnosis. Interestingly enough he didn't get a diagnosis at that point under the DSM IV but did a few years later under the DSM V (this seems to be happening a lot since rather than making Sensory Processing Disorder its own diagnosis they just folded all the symptoms into the diagnostic criteria for Autism). Reply Interesting. I got a SPD diagnosis years ago, probably under the DSM IV-TR, but we're pretty sure I'm not autistic. I definitely have sensory processing issues (I still can't tolerate loud noises easily or eat Jello, for example), but I don't think I could get an autism diagnosis; I just don't have enough of the other symptoms, nor would most of the treatments have been helpful to me. I wonder how that would be handled. Reply Have you looked at the criteria for autism under the DSM V? It's almost all related to sensory issues. I'm not saying you should bother though as unless you're trying to get insurance to pay for some sort of therapy there's no reason to go through the process. We haven't even bothered getting a medical diagnosis for our son, his is an "educational diagnosis" from the school psychologist so that he can continue to qualify for services at school. Reply This is an amazing article. Thank you so much for sharing. I love hearing personal accounts of stories, I am in the health field and we need to hear more of these. 5 agree Reply I'm careful about what grocery store I go to. Why do we need all that junk? My rules are only what God put on the earth, except for tortilla chips and pizza crust. There are far too many places designed for the dull people, who need stimulating environment s. That's why nature will always be best for growing children. I'm bipolar and work with children. But if I have a bad day I can say, "my feelings are telling my brain to cry all day. My brain can't say, no, this is a good day! Stut up!" My kids understand my naughty brain. They experience confusion when the teacher tells them to do something they don't understand… but the other kids do. They learned to copy other kids actions… 1 agrees Reply Excellent post, thank you for sharing your story. 4 agree Reply Another adult autistic here… Married, two dogs and in training to be a maths teacher… despite not being able to tie a shoelace! This is very familiar, and none of my adult friends have minded either… I figure if someone doesn't like me because I have autism then they aren't my kind of person anyway! It's always nice to hear about another adult though-so much of what I see is about kids and teens. 10 agree Reply ADDERAL Reply You have to be really careful with that stuff. I happen to be on the spectrum but can't take it for my sporadic attention problems. I spent more time losing weight I didn't need to lose than focusing on my IB/AP exams when I was taking it. That was an unsettling experience. Reply Thank you for writing this, everything seems to focused on children on the spectrum. Although we can't afford to get my husband tested at the moment, it runs about $4000.00 here in Canada for an adult to be tested for an autism diagnosis, we are certain he is on the spectrum. We are in our 40's and they were not yet testing kids for autism when he was in school, so he slipped through the cracks of getting a childhood diagnosis. Fingers crossed one day we will be able to afford to get him tested and in the meantime we try to make sure that he has earplugs for work, and his office will book time off for him if he has been on stressful jobs sites they are awesome, we accommodate his needs as best we can. That said, we are happily married and I wouldn't want to change him, I love him the way that he is. 2 agree Reply I wasn't diagnosed until I was in college; my mother was afraid that being "labeled" as a child would have made things more difficult for me, rather than easier. I don't know if she made the right decision—I was in a school system that would not have had many resources to help, and we did not have the money for anything else at the time—but I grew up without a diagnosis. I truly did not understand for years that the way I think, the way I process information, is drastically different from the people around me. I mean, what must it be like to KNOW instinctually how long to hold eye contact in a conversation without counting it out? Seriously, how do any of you know how to react to things if you aren't constantly processing every aspect of your environment? It baffles me. That said, I think I live a fairly "normal" life, despite being on the low end of "high functioning" on the spectrum. I have a college degree, a job in my field, friends who are unaware that I'm anything more than quirky (and let's face it, we ALL are quirky to some extent :P), friends who are aware and don't give a damn and help me destress when I hit a overstimulation breaking point, an apartment on my own, and far too many hockey games to cram into a single week. Autism has literally never defined who I am, for all that it is a significant part of me. 4 agree Reply I feel the same way from the neurotypical standpoint! I have no idea how your brain is open enough to take in all the sensory information stuff around you! My brain can't do that- even when I try. How do you count for eye contact and still hold a conversation! That's 2 things at once. The ASD brain is so cool to me! Reply Your story sounds a lot like my brother's. Unfortunately, he has trouble with verbalizations, so college was tough for him and he never finished. But now he has a good job, an apartment of his own, a dog, and plenty of video games. I'd say that's a pretty good life all in all. 🙂 Reply I don't have Asperger's. I'm just awkward. And I never know how long to hold eye contact either haha. Reply Thank you for sharing this! I sometimes wonder if I am on the autism spectrum, myself (among many other possible diagnoses). Your experience sounds a lot like mine. I'm afraid to admit my trouble with numbers, especially (due to job prospects – I can use a calculator just fine), and only recently admitted to my husband I have major social anxiety. He had the "You seem great in social situations!" response. Yeah, because I try, REALLY hard and force myself to say the things I am supposed to say, and smile at people and make eye contact. Then I need to go to bed after about an hour or two. It's so exhausting. I would love to take meds, but am worried about pharma-reliance. What testing is out there for this? I always thought people were just diagnosed after simply talking to a psychiatrist, like with so may other invisible/mental diagnoses. My friend who has autism and bi-polar in her family is adamant that I am neither bi-polar nor autistic, but again, high-functioning here! I also have definite forms of synesthesia (especially with numbers, days of the week, months of the year..). It's true though – a diagnosis doesn't necessarily change who you are. I studied Psych in college and quit because at the time, I felt labels were unethical (I've since changed my mind), but also because I couldn't pass the mathematics classes to save my life. Ugh Reply oh! I am just learning about synesthesia. It totally sounds like a super power to me. (here's where I got introduced to the concept: http://www.scientificamerican.com/article/some-rules-of-language-are-wired-in-the-brain/) I'd love to read a post about your experience with it! 1 agrees Reply I am also synesthetic! Although for me, it is primarily auditory, though there are some visual things that trigger it as well. For example, my parents recently repainted their living room to what a lot of people would deem a very nice shade of pale yellow, but every time I'm in there, I literally taste sour milk flavor on the back of my tongue. Auditory-wise, anything that I hear has a "shape," is the best way I have been able to describe it. Like, sound just kind of has this extra dimensionality to it. When words are not involved, such as with classical music, there are often color associations as well. Frequently sounds also have texture, which tends to be most prominent in my mouth, like how you notice that food has certain textures when you eat. There are certain words I simply can't stand because of their "mouth texture" or because they "have a dumb-looking shape." Which sounds absurd to most people, buuuuut it is what it is I guess. I know I have some sensory issues (I always cut tags out my clothes, I loathe jello and other similarly textured foods, I don't often handle loud music very well unless I am seeking it out on purpose and I can leave if/when I feel like it, and it is VERY hard for me to focus when there are a lot of surrounding visual/auditory stimuli present). But I have never been diagnosed with any sort of autism. Primarily, I suspect that my sensory issues are a result of the synesthesia. I don't suspect autism spectrum, even high-fuctioning, because I don't think my sensory issues extend to even what the OP discusses. They are annoying to deal with sometimes, but they have never been super disruptive to my life. I also don't exhibit any of the utterly outstanding intellectual brilliance that many of those with high-functioning autism seem to, so there's that as well. Reply Re: clothing, tags etc., I have been diagnosed with Fibromyalgia, where everything hurts and my skin is super sensitive. I wonder about this correlation. You've got me thinking. Everything is so interconnected, it's really so hard to pinpoint and label the "why" of it all. Re: synesthesia, I see numbers, days of the week, months of the year, age, centuries and so on in this looped linear fashion. I can't conceptualize them without "looking" at the visual in my mind. It makes me look very stupid when it comes time to tip at restaurants etc. I put on my "math face" as my friends call it – which mostly looks like I'm trying to comprehend an intense scene on a big movie screen right over my head. With words, I've always had the physical texture in my mouth, and even a physical weight to them. I am a writer, word lover, etc., but as a kid I used to annoy my friends in movie theatres by feeling out the words in my mouth as people said them on screen. I couldn't stop. I'm also a painter and other arts-maker, and I draw women mostly, because I can literally feel the shapes in my own form as I'm drawing them. It's the only way I can make them realistic. There's more. Songs play like movies for me, and I almost tune out the instrumentals (as much as I love them) in favor of focusing on the lyrics/story. I know there are other connections I have yet to make. Synesthesia is both a fascinating gift, and a big challenge. I was always pegged as a "daydreamer" and still think of myself this way, but it's mostly because my focus is intangible and internal, I guess. Reply Huh, I sometimes have weird sensitivity of my skin where it just hurts/feels sore (but doesn't look red or anything) for no apparent reason, but it doesn't happen on a consistent basis in the least. My understanding is that fibromyalgia is more consistent in that regard? That's interesting that you are a writer and an artist— I am as well! (Although my day job is actually in marketing, and I spend a significant amount of time with data and spreadsheets; I'm not a happy camper unless I have both analytical and creative pursuits in my life.) I've often wondered if there's a correlation between creativity/the arts and synesthesia— certainly when I did my undergrad art degree, there seemed to be a higher percentage of people who at least exhibited those tendencies, even if they didn't know what they were formally called. In my job as a marketer, I am not aware of anyone besides a few of our design staff who appear to exhibit synesthesia or anything similar. Also in for information about diagnosis options. I've long suspected I may be on the high-functioning end of the spectrum, but have never been sure how to go about finding out for sure. 1 agrees Reply My husband was diagnosed as being autistic in his thirties, about a year and a half ago. My reaction has basically been that at least now we can understand his issues and make sense of them and perhaps make it easier to know how to deal. Now we have come up with code words for the times he needs me to explain a social convention to him or when he is having issues with decision making or even understanding himself emotionally. We understand better that there is a reason he struggles with things I would consider a normal part of social contracts if we don't set out "rules." Once we make something a rule, then it is understandable for him and filed away. If you met him on a good day or in a social situation he understands, you probably would just think he was funny, charismatic, possibly a little grumpy if you decided to intrude, but no more quirky than anyone else who is kinda quirky. You would be highly unlikely to realize he is autistic, even if the day was not going well. Now we get it. But nobody else has to if he doesn't want to talk about it. We keep it quiet but having support and someone to help decode the world has made a huge difference. I treat the things we're learning now as his normal which for me, it totally is, I just roll with the things his brain comes up with and marvel at the things he didn't realize that the rest of us can't naturally do (like picking out easter eggs in Disney movies at full speed on the first watch). So thank you for sharing this because there are lots of autistic adults out there, whether they know it or not, and their normal is just as valid as anyone else's. 🙂 2 agree Reply Any advice on what to do when both husband and wife are autistic? What can be done to help decode the world and handle social situations when neither really understands them? Reply What I really like about this piece is that it's not only an adult's point of view but a woman's. The diagnosis rate for women is still pretty low (even with researchers working to find solutions to address that discrepancy). For me, though, I sometimes feel like I'm super normal even though I'm on the spectrum because I married someone who appears to be on the spectrum (at least to my former counselor). The irony of that is I've had to explain to my husband that between my ASD and various anxiety disorders (including potential PTSD from a vehicular crash about a year ago that I still think about on a regular basis) I will need to be in counseling for years, if not the rest of my life. I can get why he wouldn't understand why I'd be in therapy for so long (as he thought I'd only need a few sessions). Unlike a lot of people I meet that are on the spectrum, I lean more toward the understimulated end of the sensory processing spectrum and as such can appear super stoic or outright miss sensory cues. This is a double edged sword at work, though, and yeah, I work. I've even trained people how to perform the tasks I've done. Too bad I have to be in the closet about my ASD on the job. 2 agree Reply As a mom to a 4 year old with an ASD and Language Disorder diagnosis, this article gives me hope 🙂 Reply It will get better! Four is a really rough age, especially for ASD kids. I used to work as a special education teaching assistant in pre-k, kindergarten, and occasionally 1st grade and the difference between 3-4 and 6 was huge, even for the kids on the lower functioning end of the spectrum and I've seen the same pattern with my son. Reply As someone married to someone with Asperger's, this post really hit home. We often hear the same nonsense "But he seems so normal!" when the topic comes up. Thanks for sharing your story! 2 agree Reply This article has me stimming in my chair with excitement! 4 agree Reply This is great! I suspect I'm on the high-functioning end of the autistic spectrum and I love reading posts about autistic adults. I'm married, work-from-home self-employed, making a comfortable living, I even have friends… but I'm definitely avoiding social situations (hence the "work-from-home" part of self-employment), I have never known how to hold eye contact, my brain forms sentences quicker than my mouth can actually say them – and treats information a lot more efficiently if it's written rather than spoken – not to mention synesthesia, ASMR and all sorts of quirky things going on in my brain. People I have been talking to about that often exclaim that I am too normal to be somewhere on the autistic spectrum. Ok, right, I'm not the drooling, rocking-back-and-forth 5-year-old boy you usually see on TV on stories about autism. But I've spent my whole life actually trying to erase anything that made me seem autistic. Because people do give you the side-eye when you let yourself be yourself after a certain age. I still rock back-and-forth when I'm upset, or actually flail my arms about when i'm happy. I flail a lot. I have sensory overload and need to shut off. I'm still learning how to mimic "normal" people in everyday situations – what do you tell a hair-dresser when they want to make conversation? How do you close a professional conversation? How do you do small talk? I learn so many sentences by heart I feel I'm a parrot sometimes. But somehow, without an "official" diagnosis, I still feel like an imposter. Anyone feeling the same? 1 agrees Reply As the parent of an autistic child (and with other undiagnosed autistic relatives), I’m glad to see this mostly positive discussion of autism, autistic women, and autistic brains. However, for anyone who has read this far down the comments of an old post, I want to offer that “functioning” labels were created by non-disabled people to categorize how close to “normal” (neurotypical) someone was—automatically positioning autistic brains as less than instead of different. Functioning labels do a lot more harm than good. Supposedly low-functioning autistics, especially children but also adults, are denied opportunity and presumed unable to do things—instead of being presumed competent and having it assumed that maybe the right supports aren’t in place. Supposedly high-functioning people (again, both children and adults, but especially school children) are denied supports that they need and told they should be able to just handle things. Here’s some further reading from a non-speaking autistic writer on the topic of functioning labels: https://ollibean.com/problems-functioning-labels/ Reply Thank you for sharing this – I’m 30 and JUST got my aspergers diagnosis a couple of days ago – it’s emotionally affected me more than I thought it would. The system is very much set up to give support for carers and children – but if you’re an adult with a diagnosis, you’re given some websites to visit and a “good luck”. This piece has given me hope for a life with fulfilling things in it, like relationships, post diagnosis. Reply Join the conversation Cancel Reply Your email address will not be published. Required fields are marked *Comment Notify me of follow-up comments by email. Subscribe me to your mailing list No-drama comment policy Part of what makes the Offbeat Empire different is our commitment to civil, constructive commenting. Make sure you're familiar with our no-drama comment policy.