Why I Can’t Be Bothered To Be Autistic Today

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9 Responses

  1. I’ll try to leave a longer comment later. I was diagnosed in 2016 in the US, so my diagnosis is ASD. However, once I understood the very issues you outline in the perceptions of people who both are and aren’t autistic, I’ve tried to repeatedly be clear that I would have been excluded from an Asperger’s diagnosis for precisely the reasons you outline. I was completely non-verbal until I was 3 and had other speech issues until I was 5. Speech therapy cleared things up eventually. But I also have a dramatic version of the autistic split in core intelligences with my verbal intelligence 30 points higher. There’s more I’ll write later, but I empathize with so much that you wrote.

  2. Hi Scott,

    Thank you for your comment. It means a lot to know that at least someone can relate to what I’m saying and in fact, you were one of the ‘caring and sympathetic’ individuals to which I was referring.

    When people have fixed ideas about something, it sometimes makes them uncomfortable when someone challenges them and it unfortunately, it seems that most people’s ideas of what constitutes ‘Asperger’s’ and what constitutes ‘Autism’ are based on myth rather than fact. I’ve even had personal abuse online for suggesting that there is no difference between the two diagnoses.

    I’m planning to get my diagnosis updated to ASD when the UK starts using the ICD-11, but no-one knows exactly when that will be. I will then be able to join all those Asperger’s/ASD groups, but to be honest, I strongly suspect that by that stage, I will no longer want to!

  3. Anon says:

    Thank you for being so honest and sharing this I found it really moving. My sister died recently and she told me just before that she had long suspected she was autistic, always felt she was faking it (I mean being what she persived as ‘normal’) at life and often seen as difficult and abrasive. She did not seek diagnoses for the reasons you outline here. She was terrified of people seeing through her. My son, newphew and 4 brothers are all autistic, two diagnosed as aspergers, two waiting on diagnoses. My son is like you diagnosed as autistic and has much in common with you. It is helpful to me to see the attitudes he might come across so I can help bolster him up to address these and not feel in some way wrong. The brother I am closest too has found online groups often challenging and hostile despite having a diagnoses of aspergers and as the parent of an autistic child I have often found the same. It saddens me but many groups are the same, social media gives everyone a voice but often it is the opinionated and judgmental who shout the loudest.

  4. Thanks. I’m glad I was in the list of those who had been caring. I try to be kind and helpful, but am rarely certain how well I succeed at it. I did want to share some of my thoughts and reactions to different things you wrote. I certainly empathize deeply with parts of it.

    Yes, I had the lightbulb moments leading up to my assessment and then diagnosis on June 1, 2016. And I read extensively, though I did not comment because I kept wondering if I really was autistic or not. My process of absorbing information spanned a few months before seeking assessment. And in the US, private assessment was the only option so I did have to explore various alternatives. Since I have the financial resources to pay for it and I’m a white male (which means medical professionals take pretty much anything I say seriously by default), assessment and diagnosis was a straightforward process for me. Among my criteria, it was critical I find someone with experience diagnosing adults and with a track record I felt I could trust to give either an affirmative or a negative diagnosis. I wanted a real and honest assessment with results that would give some sort of internal assurance either way.

    Since then, my ongoing primary therapist, whom I found in September of that year, has found more than enough to support my assessment and diagnosis. If anything, therapy has uncovered even more extensive signs and autistic traits. It permeates so much. She helps me see the things that are different, that are autistic, and at least as importantly, the things that really *are* like other people or flow from different things, like post-traumatic stress. It’s an ongoing process, but has helped my self-understanding enormously.

    Has it helped my well-being? I don’t know. I guess. But I was in such a bad place before my diagnosis, that bar is an extremely low one. I was barely getting through each day, every day. But things haven’t really gotten any less … complicated.

    I wouldn’t say I felt euphoria with the diagnosis, but it’s not just that I had felt alone, though I had. I had felt and believed I was broken for pretty much my whole life. Different, in ways that other human beings are also different, is a step up from seeing yourself as a broken human being.

    And since I could never manage to fully and successfully do so many things that seemed effortless to everyone else, I felt weak as well. If they could handle everything, I should be doing better. Why can’t I pull it together? I have nothing to complain about. Head down. Push through. Stop whining. At least on an intellectual level, I can now see I’ve really been pretty strong, sometimes amazingly strong. I can’t really say I believe it, but it’s a nice idea to entertain for the first time in my life.

    Your interaction with the medical system echoes things I’ve heard from many people. Fortunately mine went smoothly, though I had a lot of advantages. Lots of times, it can be pretty awful.

    I also don’t participate on Facebook. That was a deliberate decision way back when it first allowed non-college students to join. I looked at it and understood that even the early, primitive versions of its algorithms tried to find past connections between people. Having people from my past who aren’t currently in my life reminded that I exist is, for the most part, more my worst nightmare than anything I would ever desire. My partner is on facebook, so I can keep up with family events, the only things I care about, second-hand. That does mean I don’t participate in any facebook groups. My online interaction pretty much consists of blogs I read and on which I occasionally comment and twitter.

    Very few family members read my blog and almost none pay attention to anything I say on twitter. One cousin, with whom I was close in childhood and early adulthood, did run across me online, read my stuff, and reached out. But that’s the exception, not the rule. My partner was upset with me when I used to my diagnosis to formally document the accommodations at work I had always informally negotiated before. That surprised me. I had viewed it as simply removing one easy to handle source of stress so I could try to focus more on important things. But there’s some element of shame and something that should be hidden in it. I mostly don’t talk about autism. I have told my kids, since it’s highly genetic and I have grandchildren and might have others and they in turn might have children. But it’s not something I discuss and most people in my life still have no idea I’m autistic.

    Under DSM-IV, my diagnosis would have been Autistic Disorder. My delay in early language specifically excludes me from the older Asperger’s Disorder, but the criteria are otherwise pretty similar. The DSM-V criteria, while not perfect, are much better but I easily meet its criteria. My therapist confirmed the above, though somewhat accidentally. I ran experiments to see if my masking was, indeed, as good as I believed it was. (And as flawed as I know it is, but that’s a separate issue.) And in discussing it, she made an off-hand comment that she would have needed to know me in a therapy setting, have the assessment results, and hear my internal experience. I never set off her “aspie radar”. She immediately corrected herself by saying something like, “Of course, your diagnosis under the older criteria wouldn’t have been Asperger’s, it would have been Autistic Disorder because of your early language delay.” The truth, of course, is that the criteria for the different diagnoses were never applied evenly. People were given PDD-NOS as children because it was viewed as “less stigmatic”. And I’ve run across a number of diagnosed “aspies” who describe their early language delays. It’s one of the reasons separating the diagnoses was not at all helpful. ASD has flaws, but it’s an improvement.

    The other reasons people would be excluded from Asperger’s is if they had any cognitive developmental delays or an intellectual disability (IQ less than 70). No diagnosis required that you have any of those. Asperger’s simply excluded everyone who didn’t have typical early language and cognitive development (first 3 years) or who also had an intellectual disability. The other diagnoses were viewed as less than Asperger’s as a result. They were more stigmatized. That was and is a form of ableism and one in which I’ve never cared to participate even though people tend to perceive me as belonging to the Asperger’s group.

    I guess I’m a weird autistic too. I’m desperate for connections and friendships, but not so desperate that I’m willing to separate myself from the people like me who may also face additional challenges. I may not understand what it’s like to be intellectually disabled and autistic, but I at least understand the autistic part. I can empathize and find common ground there. But even if I couldn’t, they are still human beings and deserve to be treated as such. One of my biggest struggles has been the discovery of how extensively autistic people aren’t really treated as human beings. That’s been really hard for me.

    On the sensory side, the sensory differences most autistic people experience include both hyper and hypo sensitivity, sensory avoiding and sensory seeking. I have a complicate mix of both, even with the same sense. I was a spinner and a pacer and still am. I need that sensory input. I love rollercoasters for the same reason. I do have the stereotypical light sensitivity, but still love laser and strobe shows even when they are sometimes painful. I can be overwhelmed by lots of conversations and crowd noise, but crave the feel of loud music. It might even be a form of synethesia. There are a few foods and textures on which I used to gag and even throw up before I trained myself to eat them without visibly reaction, but as a child I craved strong sour and bitter flavors. I ate whole lemons, peel and all. I think the only thing consistent across autistic people is that the way our brains are wired means our sensory experience isn’t typical. It varies enormously among us, however.

    I can and do control my meltdowns. I learned how to do that very young. I struggle with emotional regulation every day, but those struggles are rarely visible and never result in a full-fledged meltdown anymore.

    My partner helpfully explains to me how others perceive me, as though I had somehow missed it over the course of my life. Advice now tends to be prefaced by “all you have to do” as if it were that simple. It’s not like I haven’t read and studied everything I could I get my hands on since I was a child, trying desperately to learn and recreate all those “simple” behaviors so people wouldn’t reject me and might even like me. People who do get to know me seem to think I’m okay, even if their relationship with me is eternally situational and temporary. Or maybe I’m just lying to myself and people only associate with me for as long as circumstances require that they do. The end result is the same either way.

    I hate going to the office, but I have to do so twice a week so my partner can have time in the house without me. It’s something she requires so that it makes it non-negotiable for me. I’m tough. I can handle it. I can handle whatever it takes. I leave the house to do things for work, necessary errands, with my wife, or with my adult children. That’s pretty much it. And I feel like I’m barely hanging on to those things. I *am* doing better than my worst prior to diagnosis. I *am* also going through EMDR for C-PTSD symptoms, which my ASD diagnosis finally gave me access to recognize and hopefully improve. But it’s baby steps better most days.

    If it helps me improve things with my partner, formal diagnosis was a good thing. That’s still up in the air, it’s not something she’s comfortable with, and I can’t talk about it. If I even vaguely reference aspects she recognizes as autistic, I’m accused of “not wanting to get better” though I’m unclear what that means. So I don’t see it improving understanding on her end. I was barely surviving, however, and completely unable to communicate in any meaningful way before diagnosis. At least now, I *can* talk, at least some, in a meaningful way. I’m not immediately forced into a place where I can’t process or speak under pressure. Hopefully that will be enough.

    My childhood was so chaotic and neglectful and abusive that I never had any consistent support or reliable, healthy love. My early relationships were all at best manipulative and destructive if not outright abusive. (My second marriage was 3 years of ever-escalating, intense emotional abuse that almost killed me.) I keep trying to make friendships. I think I succeeded for a while and then they end. Often I have no idea why. The person is still there. If I contact them directly they might respond, but are always too busy to see me. Eventually I get the message to leave them alone. It’s not like there’s a big fight or a break of some sort. Every friendship I try to build tapers off and … dies. I have little in the way of family support on which I can rely. Mostly I have my partner and my two youngest adult children. Obviously, I’m the support for my adult children, not the other way around. But the closeness of our relationship does also help sustain me. I know they need me. That helps enormously, especially when I don’t know if I can keep doing this.

    There’s no harm in having your diagnosis shifted to ASD once you can. And I hope it helps you. The *idea* of some sort of autistic group sounds wonderful to me, but not enough to actually try to find any. Nor will I ever join facebook, which is where most such things are these days. The diagnosis is so relatively new there aren’t many of us older ones who actually know we’re autistic. So there’s that as well.

    I mostly wanted to let you know you very much aren’t alone. I wouldn’t say that the experience of being diagnosed has been great. But I would almost certainly be dead by now if I hadn’t been. If not self-inflicted, then even the small bit of self-awareness I’ve gained that saved me last year when I had a twisted bowel would have been lacking and I would have almost certainly died then from an intestinal rupture. Good or bad, I’m probably only alive today because I was diagnosed. I honestly still don’t know if that’s really a good thing at all. Sometimes I get so tired.

    I hope things improve for you. Take care.

  5. Hi Anon,

    It’s good to know that you found reading about my experiences useful. I did wonder if I should publish this article because my experiences have been so negative, but I think it’s important that all types of experiences are shared, not just the positive ones. I hope that some of this may be of use to you and your son, but I do think that I’ve been particularly unlucky and my experiences are not necessarily the norm. Many people seem to have mixed feelings about their diagnosis, but most people I’ve spoken to seem to regard it as a positive thing overall.

    It is interesting to hear of your brother’s experiences with online groups, at least I know I’m not the only one. Unfortunately, my desire to connect with other autistic people is so strong that I’m drawn to these groups against my better judgement and it almost always ends badly.

    Take Care, Cat

  6. Hi Scott,

    Thank you for taking the time to share your story in such an honest and heart-felt way. I know that I’m not alone in having had negative experiences post-diagnosis. I notice that we were both diagnosed about two years ago, so perhaps things will improve with time for both of us. Lets hope so.

    It is really useful to have some contact with other autistic people, as sometimes they are the only ones who understand, but I’ve almost given up on trying to meet other autistic people online (apart from Twitter)

    I’ve decided to be brave and attend my local Adult Asperger’s group. I’ve been assured that it is open to all, despite it being named Asperger’s (work that one out!).

    It’s just sad that I had to email in advance, warn them that I have been diagnosed with Autism and formally request permission to attend, rather than just turn up on the day like everybody else.

    Anyway, I’m going to go in there with a positive attitude and who knows, I might make some new friends. At least if anyone’s going to make any prejudiced and ignorant remarks, they’re going to have to do it to my face!

    Take Care, Cat

  7. I hope you have a positive experience at the local group! It sounds simultaneously exciting and mildly terrifying. Take care too.

  8. AG says:

    Hi! Thank you so much for sharing your experiences, and particularly with such honesty and clarity. It is so important for people to share their experiences.

    I am the father of a 7yo who was diagnosed a year ago with ASD. We live in the US where from what I understand practitioners no longer ascribe any meaningful (official) differences to the terms Autism, Aspergers, and ASD. The sense I’ve been given from all the doctors and mental health counselors and speech language pathologists is that we really don’t know what the contours of all of these issues are (what the relationship is between certain symptoms) and that ASD is a term that we use to really acknowledge that. We don’t know enough to say that this is truly different or the same as that so in the US the term Autism/ASD term has come to mean any condition in this general area.

    All of this is to say that I’m so sorry that you have experienced such division and stress concerning whether you are Aspergers or Autistic and whether you may participate in these various communities. My experience (again in the US) is that we certainly don’t know enough to be this divisive and that people share many of the same experiences even if they would have previously received different diagnoses. Likewise, people with the same diagnosis can have very different experiences.

    I just want to send you support and I wish I could take the stress away of having to fit into one of these specific communities or of having to prove who you are. Perhaps there are other online communities (based in the US or elsewhere internationally) where these specific labels don’t matter?

    I wish you all the best!

  9. Hi AG,

    Thank you for your comment and your kind words.

    I appreciate that the medical profession is moving away from thinking in terms of Asperger’s and Autism as separate diagnoses. Many countries (including the US) use the diagnostic manual DSM-V for diagnosis, which doesn’t distinguish between Asperger’s and Autism and I certainly think that this is a step in the right direction, however the UK is currently using the ICD-10, which does make that distinction. The ICD-11 is imminent and aligns with the thinking in the DSM-V, but I have no idea when they are going to start using it (and neither does anybody else as far as I can tell!)

    The trouble is that even though the medical profession has decided that Asperger’s and Autism are not two distinct conditions, there are many people who disagree. Some people see Asperger’s/Aspie as an important part of their identity and unfortunately, for some of these people, part of that identity is believing that they’re different to me.

    There are groups who are open to all people on the autism spectrum, some of them even state in their constitution that there is no difference between Asperger’s and Autism. Unfortunately, I have found that just because the founder of the group is educated/knowledgeable/politically correct, the same cannot always be said for the members of the group and it’s usually not too long before some form of prejudice rears it’s ugly head. I’ll keep trying though 🙂

    Anyway, bye for now, Cat

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