511: Aspergers Hell

I share the same camp with a mind that goes out of control in its quest to search. It is like my mind goes bungy jumping without my permission. It sees an avenue of escape and jumps. Boing! And I am left somewhere in between the launch pad and the landing ground, midstream in the air, flailing, and screaming for rescue. My mind literally pours into multiple dimensions of jumping thoughts. The Energizer bunny overdosed on caffeine skydiving without a parachute.

And what does my mind pour? Everything. All the data I have collected from being. Everything I have taken note of during my waking and sleeping hours: each person, each face, each smell, each droplet taken in by the senses, and even the liquid data beyond the common senses. Everything I have ever learned, seen, contemplated, deduced—all brought to the same over-crowded table for dinner, and each wanting a turn at conversation. It’s loud. It’s annoying. And it’s uninvited company.

I am sensitive to my world like none can understand, unless born into the view I see; unless transmitted in completion into the suit I wear, and forced to walk as I walk.

Being on the spectrum which includes neurological differences leads to challenges that the typical person just doesn’t seem to grasp. And how could he? I mean for the most part we, as a collective, we look ‘normal.’ In fact, many of us are quite successful at one endeavor or another, high-achievers and/or proficient in a vocation or skill. In fact, many of us are quite charming despite our peculiarities. And most of us aren’t ‘handicapped’ on the outside at all. Most of our disabilities, if not all, beyond our clumsiness, are entirely invisible.

The typical person usually doesn’t understand how the multiple traits of Aspergers, sometimes reaching a hundred in totality, quickly add up. While it is true one singular trait taken out of the pool, such as dysgraphia or dyslexia, might be manageable with effort, when one takes into account the multiple traits all combined and compacting one person, one can more easily theorize how overwhelming the condition can be.

Still from an outsider’s view, we really ought not have too much to complain about. I mean everyone suffers. But that’s exactly the point! We suffer like all humans but the suffering is accentuated and multiplied at every level. We are experiencing life at hyper-speed in hyper-sensory overload. And we take in life to the tenth-degree compared to the average person. We also take in other people’s crap! We feel their pain and their suffering. In truth, sometimes we can’t tell if we are feeling our own stuff or someone else’s pain. And if that weren’t confusing enough, we feel profound empathy for the suffering all around us.

But not OUR OWN suffering. We beat ourselves up about our own suffering because we believe we should know better, be stronger, be wiser, and have control. We hate that we are sad. We hate that we are depressed. We hate that we are again in a place of discomfort.

But the most extreme confusion is not knowing when to stop the thoughts. We can’t tell which thoughts are actually doing us some degree of ‘good’ and which of our thoughts are merely a result of our minds dive-bombing off a bridge. And to top that, we can’t even tell what is ‘good’ and what is ‘bad.’ Everything seems to be able to prove its own point and hold its own ground. Except us of course. As we are in a constant free fall.

Yet, from an outsider’s view, we complain too often; we are self-focused; we pity ourselves; and let us not forget that we take life too seriously.

The key word in all this being: outsider.

If we wore our traits on the outside, things might look a bit different to the outsider. If all the challenges were dangling off our bodies, perhaps blinking words or metaphors. If all the pictures in our minds were on display, if all the thoughts trumpeting, if all the pain made concrete that was brought on from sensory overload, if all the mixed emotions could stampede in parade fashion, if all the questions could be bull-horned in an amphitheater, if each and every one of the close to one hundred traits could be corralled and put on display, maybe, just maybe, the outsider could grasp the enormity of what we experience in simply being.

For us life itself is a challenge. Forget the other stuff, e.g., Maslow’s hierarchy, relationships, health, and finances. For us the challenge is just being alive another day—just opening our eyes and getting out of bed. Give us an hour and we’ve lived a day. Give us a day and we’ve lived over a year. We are exhausted, and yet we carry on. We are terrified, yet we smile. We are confused, yet we forge through. We are lonely, yet we offer support.

We are—and some days that in and of itself is enough to make us not want to be.

I have a runaway brain. I have a machine inside of me that knows how to twist reality, so I never am quite certain of my own emotional state. I know fear. I know love. And the rest is a jumbled mess that seems illusion.

My mental and emotional state play teeter-totter all day long. I have no bearings. I have no idea how I will respond to the next over abundance of stimuli or the next trigger. I have no clue what pattern my brain will choose to latch onto next, what puzzle it will try to solve, or how it will manifest some data as proof of why I should be fearful. I am watching myself constantly, and knowing my brain is its own entity, and knowing I have a heightened awareness to everything and everyone I will come into contact with, and everything and everyone I will think about.

Having Aspergers is like jumping into a river and not only feeling the cold stinging water, but feeling everything that leads to the water’s arrival and knowing everything that might feasibly come after the arrival. It’s time travel in thought, all at once, why boggled down with emotions that make no sense. Life is complicated by the simple act of thought, and to not think seems mostly an impossibility, without the aid of extreme measures, strength, and endurance. Every ounce of energy might be used up on just controlling and stopping thoughts. And then depleted, every ounce of resistance is wiped clean, and we are left infantile.

Next the self-blame rolls in for not having had been enough—strong enough, normal enough, in control enough. We twist the thoughts into a labyrinth-mess. We pity ourselves for pitying ourselves. We become our enemy in hopes of becoming something other than self. We fake confidence or we hide out. We try to escape who we are. We try on different personas and personalities. We try on different skill sets and activities. We change interests. And all the while we watch ourselves in confusion.

And then someone says: Everyone suffers. Stop pitying yourself.

And I think, shit, I see his point. But how the hell do I stop wanting to not be in hell?

 

Samantha Craft, M.Ed. (aka Marcelle Ciampi) is the mother of three boys, one adult son who is on the autism spectrum. She is the lead job recruiter for ULTRA Testing, an autism educator, the author of the blog and book Everyday Aspergers, Selection Committee Chair at the ANCA World Autism Festival and is active in autism groups locally and globally. Samantha serves as a guest speaker, workshop presenter, curriculum developer, neurodiversity recruitment specialist, and more. She is working on her second book Autism in a Briefcase, written to provide insight to employers and agencies about the neurodiverse talent pool. A former schoolteacher and advocate for children with special needs, she appreciates the skills and talents of autistics. Diagnosed with Aspergers in 2012, she enjoys the arts, writing, movies, travel, and connecting with others. (More people know Sam by Sam because it’s her community pen name.)

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44 thoughts on “511: Aspergers Hell

  1. I identify strongly with all of this – which is clearly reflecting the female-type Aspie experience. Since I discovered my AS (thanks to you!) I’ve become an inseparable friend of another Aspie, female and very different to me in many ways. What confuses me about her is that she doesn’t have a female Aspie profile; her traits are of the classic male type – most noticeably a lack of empathy and ability to camouflage. I wonder what proportion of Aspie women are like this – possibly the majority of those diagnosed as having AS. I’ve no idea.

    I’ve suffered misunderstanding all my life until my recent discovery of AS, and my unashamed ‘admissions’ to others, that I have it. Now, at last, I feel in control, and I’d reject anyone who’d deliberately choose not to try and understand me. It may be easier for me, for I have other oddities such as a persistent streak of ‘genius’ which gains me a certain respect, so that in a sense this has counteracted my more obvious Aspie weaknesses/eccentricities. Average people tend to make allowances for what they perceive as ‘genius’, and assume that polymaths and philomaths are natural eccentrics – without looking any deeper.

    1. oh indeed there are at least 3 different types of Aspergers. Although at least 75% of the men I talk to are more like me, and less like the typical male aspie stereotype (lacking empathy/logical). And about 10% of women are not like me. But 90% are. So definite differences and sameness. It’s quite interesting. I think a few our misdiagnosed and present themselves more as narcissistic cruel geniuses. LOL. But what do I know? 🙂 Really enjoyed your comment. Thank you 🙂

  2. I can’t believe you have yet again explained my existence and obviously your own. I am going to say you are awesome because you are still here living what you have described day in and day out.
    No rest.

  3. I was diagnosed 6 months ago, at the age of 28, as having Asperger’s. Suddenly I feel like a whole new world has opened up to me. Instead of being the different one, the weirdo, there are others out there who think like me, feel like me, have trouble with the same things as me. And you have expressed exactly how I often feel about myself. The only difference is I don’t see it as suffering… I don’t know what it is like to live in anyone else’s mind, so this is just how I am. Yes I get exhausted with thinking… yes I find it difficult to concentrate. But I have found that there are some things that Asperger’s has given me that ‘normal’ people don’t possess… They have never smelt the rain… they have outgrown the childlike joy you can feel from simple everyday happenings… Stay strong, and thanks so much for your post 🙂

  4. yes, that’s all very true…especially the part where you discribe the fact that ‘just being’ is enough of a challange..never mind mastering all the challenges of live 😉 or the fact that when we live an hour, we spend the energy of an entire day or when we go through a day, its like going through a year (of a neurotypical person?!). may I ask you, how do you find the time and energy to write all this awesome stuff??

  5. I have really appreciated your comments. Trying to see if my 18yo daughter is a kindred of yours. 🙂

    We are a family of a strong faith in God thru Jesus Christ, and I want to add that there is a mystery why we are the way we are, but we trust our Heavenly Father that He knows what He is doing. There is GREAT comfort and rest in that. I have a feeling my daughter enjoys her uniqueness (but sometimes it is hard and alarming to us!), and truly has found God to be such a blessing, comfort, and place to find her real value. I know God will use her (and has used her in many ways) JUST the way she has been made for her good and His glory.

    Just a thought…

  6. “I have a runaway brain. I have a machine inside of me that knows how to twist reality, so I never am quite certain of my own emotional state”

    I 100% understand you there, it’s like you described me! Also the last part about constantly shifting interests and trying different personalities and personas, which just leads us to more confusion.

    I’m glad I found your blog. I’m reading through your previous ones too.

  7. The problem I find in addition to this, is that even when you finally get to sleep, the brain then switches into another mode of activity…that of lucid dreams, complex , often times disturbing and I wake up exhausted or sometimes crying. I have a recurring dream, that I leave my home which I love dearly for another property. In the new property which is always enormous with loads of rooms leading into each other (bit like a hotel) and then in the dream I realise that I have no income coming in.

    I have given up my little house and there is no going back. I waken in a panic and am so relieved that I am home. 🙂

    Once I dreamed that someone gave me a karate type chop between the shoulder blades. Next day I actually felt the pain as if it had really happened. That one spooked me!! How wonderful that we are finding each other through the internet when we all thought we were so alone. It is such a comfort to me. Thank you.

    1. yes, I am an intense lucid dreamer and often my dreams dictate my mood upon waking. thank you for sharing. I have a reoccurring dream of being in a car… finally figured out the car, the driver, and passenger are all me. yes, wonderful to find community. Best wishes

  8. Akkkk! Yes, the thoughts!! I try to fix this by sliding a creative or inventive thought over the intense and competing thoughts…I have come up with some good fixes and inventions due to my band aid fix. It is horrible when the creative thoughts are blocked for any reason; and the pain that comes from the never ending and annoying river of thoughts, is very painful on a level that equals physical pain.

  9. I have followed your blog in hopes of helping my daughter who I feel has asperger’s. She is very defensive when I mention that and says it is only her ADHD. I am reaching out to you or others on this forum if counseling has helped. It breaks my heart to hear her say I living hour by hour. She is a recent college graduate and is struggling to I finding out what she should do. Her mind always thinks she should me able to do it all.

    Any thoughts from others in how I can support and guide her would be greatly appreciated.

    1. my heart goes out to you; please consider joining the Facebook site to the left; I can post an anonymous question to readers there for you. Just private message me once there. Best wishes.

  10. This:
    “For us life itself is a challenge. Forget the other stuff, e.g., Maslow’s hierarchy, relationships, health, and finances. For us the challenge is just being alive another day—just opening our eyes and getting out of bed. Give us an hour and we’ve lived a day. Give us a day and we’ve lived over a year. We are exhausted, and yet we carry on. We are terrified, yet we smile. We are confused, yet we forge through. We are lonely, yet we offer support.”

    I almost wept with the truth of it. That is how I feel daily. I have a strong faith in life, hope and love but that does not dismiss this daily battle…no one can really get it unless they live it I suppose…I just can’t believe you explained it yet again- how daily life can be for me…now I feel more validated and less guilty that just waking up takes some sort of enormous effort:)

  11. Thank you for sharing your gift of describing the inner workings of an Aspergers – girl … Me.

    The only thing that I may misunderstand from your writing is the concept of perhaps preferring to stay in “hell.”

    For myself, I keep chasing after peace. I want absolutely no part of remaining in hell.

    Uh, hell-no.

    : )

  12. Wow! I’ve liked reading your blog. This brings back memories. However, I’ll tell you that things get easier; the myriad of thoughts, analyzing everything, trying to understand and make sense of it all. It can be sheer hell, but it does get better in time. As time goes by you start to differentiate to some degree and let go of things that are impossible for you to make sense of. It’s not the constant anguish it once was. At the same time, things get worse. You realize that you will never “fit in.” That yearning to fit in never dies, but each time you feel you are close, something ruins it and you realize you will never be one of them no matter how much you’ve learned or how much you think you conform to the norm. Some peace can be found in liking and accepting who you are. Better yet is finding a person who appreciates you as you are. This has been my saving grace. No matter if no one else accepts you, having one can make all the difference.

  13. My late mother used to say that the autistic brain never shuts off and is wired too tightly. I agree!

  14. I don’t think things have gotten much better for me over the years. I am now 66 years and have suffered my entire life with Asperger’s. The discovery of having Aspergers’ several years ago gave some small amount of peace knowing the reason, but at the same time does not reduce the challenge. It is helpful for those who love me. And I take more care to protect myself from dangerous stimulation (noise, activity, smells, crowds, touch, etc.) . But, the pleasure some find in life is beyond my reach. My thoughts torment me with the constant activity of them. I do spend much time alone, but still like to be with friends whenever I am able. Like the writer above I am a Christian, but even that can be daunting as my mind has many “extra” thoughts to add to life’s confusion of trying to know how to be with others. Christianity can add to the “not being good enough” problem, even though not being good enough it not a Christian truth. It also helps though in knowing I am completely loved even though I have a broken brain. The depression and anxiety has been life long. I do take a few supplements that help with those problems but do not relieve them entirely. I cannot go back in my memories to “happy thoughts and times”. My memories are hard and difficult. One of my children has been angry with who I am for 30 years. The one thing that is good in my life is my husband of 43 years who accepts me and loves me. And I have “normal” friends who love me deeply. These are the treasures I hold dear.

    1. Hello. It is very true that the feeling of not being good enough is disproved as Jesus died for our not being good enough and made us right with God. Why is it that I know this truth, but struggle with much of what you have said and also share the same view that Asperger’s isn’t smooth sailing, but a challenge? Perhaps it is because though I know that God loves and forgives me, it is the material world that I live in; and the challenge of isolation, maintaining sensory balance and control of my emotions can be overwhelming. I am wondering if you have ever gone to therapy? I have benefited from it. It took some time to find a compassionate therapist. Perhaps family counseling would help everyone love and accept each other and lead to a better future. I know that can sound overwhelming. Where I live, I am eligible for therapy (CBT) that Medicare/Medicaid pays for. CBT, or talk-therapy, is just that. Talking with someone about my challenges and working with them to get ideas to cope and better understand myself. Fortunately, much more is known about autism and its spectrum of disorders so searching for a therapist with experience in autism won’t be so hard to find. I don’t know if you take any RX medications. I take something for anxiety and an anti-depressant. Perhaps consulting your MD and getting a referral for a Psychiatrist (they do the med prescribing) would be something you would consider. Of course, being a Christian, you can pray about this and ask others to pray for you. I sure give you credit (and God as well) for living undiagnosed and facing discrimination and isolation for 30 more years than I have. I am glad you do have a loving husband and friends. That is a bonus. God bless you. 🙂

  15. As an eighteen-year-old with Asperger’s (who also happens to be female) and is also housebound at the moment, unable to leave the house to enter the city, all its bustling streets, bustling people, noise and mayhem, even with sunglasses and earplugs and deep breathing, would you have any advice on how to cope? Everything you wrote here resonates to an astonishing degree; but sometimes I wonder if I will ever be able to hold down a job, or do anything, and at this stage, I fear being “disabled” for life.

    1. if you can, join our facebook community. I post questions there are people offer out insights. I think other people with aspergers would be who to ask. I would say trying to find ways to ease your anxiety at home first….. exercise, diet, supplements, support systems and try to find support when you leave the home.

    2. I can relate to what you are saying. While I am sorry for what you are going through being so isolated, I am glad to hear I am not alone in my own struggle. I have AS and am 36. I was almost fully home-bound in my 20’s. I can go out with a help person and wearing earmuffs (the kind construction workers use). It took time with a trusted therapist, medication for managing anxiety and impulse control. It took a ton of support from my mother as well. You do have the blessing of being 18 years younger than I am. There is so much more awareness now than even when I was in my 20’s. I blog on WordPress as well and hope you can find something of use if you choose to visit my site. I hardly claim to have figured out how to live life as a fully independent person, but I am in a better place today than I was in my 20’s, even though my mom passed away last year. Growing in my faith is what pulled everything together and gave me perspective.

  16. you are a genius. it’s exactly my feelings and life, expressed clearly. thank you thank you.
    my life is hell. I suffer from AS and spondylitis! and i live in a medieval stupid country! So I guess that you imagine my XXXL hell!

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