Dear Individuals on the ASD Spectrum and Others: I am Sorry

I am sorry that my manner of expression indicated to you that I do not want to understand or respect what you experience and feel, and think that people who state they are “normal” should have accommodations rather than those who have lacked them for so long. I am sorry that what I said was interpreted to mean a very direct expression that the experience of those our society commonly identifies as “normal” or “non-disabled,” have the same experiences as people who experience the vast array of barriers, disrespectful situations, assumptions and general awful behavior experienced by those with any type of disability, self-identified, or identified by others.

I also did not say what I said to indicate that those with painful physical disabilities, chronic illness, and other barriers to pain-free lives are experiencing something “good” that should be encouraged and increased.

My thought process is different to others. I thought I indicated that but obviously I did a bad job. My manner of expression that is legitimately mine, may be and apparently is, misunderstood.

I DO understand that people on the ASD spectrum are as diverse in their thoughts and experiences as those who are NOT. They may well be moreso. I understand that those on the spectrum have deep feelings and are incredibly empathetic to others. I learned that people who state they have autism, have had similar experiences to me, possibly much stronger and more intense. I did not know this before, and now I do.

That said, what goes on with me does not mean I “understand” everything, including others’ thoughts and feelings at all times. It means I am frequently overwhelmed by the thoughts, feelings, desires and motivations of others. This can include strangers encountered while shopping, but of course much more so – close family and friends.

So, people interpreted the story I told about the young autistic man who asked me if there would someday be a cure for autism. I wrote in shorthand, because as I stated in the beginning of the article, I was going to do it differently: my way, the way I am learning for my self. Obviously since people who are formally identified to be like me are no more than 1% of the population …

There ya go. Nobody understands what the fuck I say so I usually don’t say anything. For years and years I made stuff up copied from what others thought and felt.

So the statements that made autistic people angry and made them think that I thought autistic people had no feelings or empathy: those were my thoughts in my circumstance at the time. I could tell how fearful he was and I sensed he feared I would not respect him or his perspective. My mind interpreted that as the statements I wrote in the article. I thought at the time, “He won’t care your baby had Down Syndrome.” The reality of the situation, I realized over time, was – he was afraid that I would not care about what he had to say and his situation. The best I could do at the time was, “God means for people to have autism.”

Now – what I genuinely believe, and what I think, has a chance of being for real, true – is that nature and humanity does have a purpose and need for those with autism and many other cognitive differences and physical differences and what are often termed “disabilities.” People in the past have been so twisted that they called some far on one side of ASD spectrum, combined with abilities that seem “miraculous” to many, “Idiots Savants.” These words alone show the level of respect others had for Blind Tom, described in An Anthropologist on Mars by Oliver Sacks. To this day, some who are called “savants” sometimes “perform” for others who exclaim how miraculous they are. I just don’t like this. I’m sorry. I do not like people being viewed as performing animals. I don’t think animals should be viewed as performing animals either – but you already knew I was C*R*A*Z*Y and making shit up, right?

And that’s the case for me. I’m not a “great empath” – though I have been at times, somewhat shrewd. It isn’t just that I don’t know what to make of 90 percent of what comes in this door. It’s that it overwhelms me. Overwhelms me to the point that for most of my life, I didn’t know who I was. Like many others, I reeled from situation to situation, job to job, project to project. I took on things that I should not only never have taken on, they were things I could not change nor improve. All I could do was hurt myself and expose others I cared about to potential harm as well. One person described today they had stuck with a sociopathic college friend who treated others horribly because they didn’t want the friend to be totally alone, to the point where they almost had to drop out themselves. Like that. This person’s experience has validity, right? Mine does not.

In terms of “unwanted perceptions” or feelings from others – one aspect that’s been identified in isolation is called hypercacusis or hyper-acute hearing. Two people I am very close to experience this. I only experience it if I’m very close to either of them, and then immediately go out and hang around with others. It is terrible.

As to all the rest, the statements that people who say they are “empathetic” aren’t, and there is no problem of this nature, everything I said is a lie, they are certain of this –

I have heard many similar things, for many years. I was told, when I was raped 11 days after my 21st birthday, “Just pull yourself together. It happens to a lot of women.” I am 53 years old. I am 10-10 on the ACE scale (Adverse Childhood Experiences). I was treated to a nice web page that asserted I had murdered my baby with Down Syndrome. It was as a result of Alan Rodgers’ decade-plus custody battle, nothing to do with me, really; our family and son just caught in the nasty crossfire. Anthony died in an accident at home. He died in my arms before the ambulance, which went to a wrong location, was able to come back the right way and try to help. When I disclosed that a well-known writer had slapped my face, groped my ass, and announced “With an ass like hers, you just know she loves to be spanked!” I was told I was lying and besides, there was no independent corroboration, I hadn’t pressed charges, it could only be found anonymously told on the internet (by me): I wasn’t even saying his name!

Doesn’t this sound crazy? Oh my god, how could someone have so much go on with them? What a liar, she just wants attention.

Please tell me I do not hear other people’s thoughts.

There are far too many of these types of statements made about others who express many different truths about themselves. Each is saying “Please hear me, Please understand me.” That is 100% what I was saying. There are so, so many people whose go-to is to put somebody else down, blame them, or try to shame them for whatever cause.

My situation is that I had 10-10 on the ACE scale and that these unwanted and overwhelming perceptions of others’ thoughts and emotions  ran in my family on both sides, just as did many other things.

I teach from the book An Anthropologist on Mars by Dr. Oliver Sacks. Dr. Sacks writes, in the introduction, of realizing that the human brain, including his own, as his right arm has been injured and is immobilized, forcing him to use his left hand and even foot, was so flexible and malleable. He writes, movingly, of observations by many neurologists that individuals with “disabilities” in fact, had strong abilities as well as the deficits they faced. Current neuroscience is now discovering that theoretical “disabilities” are in fact present among nearly all people in a variety of cognitive areas. If we valued the ability to listen to others and put one’s own self aside as much as our society values those who can economically, socially, and physically exploit others, we would have a different world. Yes, that is what I am saying.

I was diagnosed with complex PTSD in June 2007 as a final result of four precipitating causes. The death of my son in my arms, the death of my stepmother where I could not help or change the course, being raped and thinking he was going to strangle me to death, and the least, last cause: the false web page accusing me, my daughter, or Alan, of killing my son.

This paints me as a “victim.”

I am not. Concurrently, reeling, confused, all unknowing, I have written all these things I have and done my best at them. There are hundreds of formerly homeless families with decent homes and good jobs that I was able to raise funds to help. There are buildings built with funds I raised, and education and economic programs employing people and improving communities in places that otherwise, might not have accessed them. Hundreds of former students have had encouragement, education and above all, respect for who they are, their voices and their words.

There are many writers I have worked with and encouraged to excel and achieve. I do not wish to draw other friends into this because my purpose was and remains to help make things better economically for other writers – in particular those who are economically and socially marginalized.

I overtly stated that in my article, right up front, that I just couldn’t do what others expected any more. I stated as clearly as I could, “I can’t express myself like what others say and you are used to reading.” It’s part of figuring out who I am and what is important to me. My cognitive situation means that is very hard for me.

So, formally, I do not believe that individuals with self-identified disabilities or medically-diagnosed disabilities are the “same” as those who do not identify as disabled or present to others as “non disabled.” I do not understand a lot of terminology used but I try to speak in ways using terms that I do understand. My understanding of reading what others have said and listening to them is that some people are working to help others to understand that there are “invisible disabilities.” I have been a college teacher since 1998 and I know there are many students with learning disabilities: they do NOT want to be visible to other class members as “the learning disabled student.” I am not writing about that, but I can understand learning disability as well as other illnesses being categorized as “invisible disabilities.”

Because I do know what I have faced and what those I love also face: I do not care if you make fun of my stating I have empathic traits or telling me those are not disabilities. I would be interested to hear why PTSD is no problem. I need education on this because it was a big shock to me when I applied for new insurance and they not only stated it was a “pre-existing condition,” it was also regarded as a permanent disability.

Yeah, I think I will definitely state publically on the internet that I was diagnosed with PTSD. It’s so helpful in obtaining medical insurance or interviewing for executive jobs. Then to make things more positive, I’ll state publically on the internet that I have empathic perceptions and even sometimes hear what seem to be “others’ thoughts” they do not intend and I might not really understand. Nobody ever diagnosed anyone with a different mental illness and gave them things like lobotomies and shock treatment because they said they heard voices – especially ones that the supposed speakers vehemently denied. Nobody many generations ago EVER burned people at the stake or gave them the drowning test due to similar statements.

I could just copy what others say and do. Then I wouldn’t have any trouble.

Like Shane.

I came to understand while learning about Tourette’s Syndrome, that Alan Rodgers, whom I loved, who died, likely had a mild form of the Syndrome. He was not aware of this, nor was he diagnosed, as he soon had other illnesses that took precedence, for which he was treated for the last three years of his life. He was not only viciously mocked for the “Touretty” things he did and said (and some of them greatly upset me in terms of echolalia and similar behaviors), part of this was used in his nightmare custody battle.

The way I was treated growing up was designed to 1) make me into someone I wasn’t, including forming and guiding my statements, movements, posture and appearance; 2) enforce my speaking, when permitted, what others wanted to hear. Because of this, I am highly attuned to others’ expectations, while at the same time, my default is to assume no one wants to see me, hear me, or even could or would. That’s part of the ACES. No I was not saying “bad things” about the young autistic man and what was important to him. It was about me.

What do you think?

5 thoughts on “Dear Individuals on the ASD Spectrum and Others: I am Sorry

  1. CarrieS

    Amy, this is Carrie, we met at Baycon 2014. I am very angry about the post you wrote for Special Needs in Strange Worlds, but I am also truly concerned about you. This post here on your blog is of course very personal and reveals a lot of pain but it also sounds to me like a person in crisis, someone who’s symptoms, regardless of diagnosis, are spiking. I am not a doctor or a mental health professional. As one human to another, I am asking you to please consider getting some help, now, today, and not from whoever you have been currently seeing. I don’t think you are “making shit up” and I do think that your experiences and perceptions have validity, and it’s because of this, not in spite of this, that I hope you can get some help to deal with whatever pain you are experiencing. I know you might read this as condescending, but truly, I wish only the best for you.

    1. Amy Casil Post author

      Hello Carrie – yes of course I remember meeting you! I am sorry you are angry. Those who are close to me are suffering from serious stress related illness and for me, this is worse than any cause of my own.

      Thank you for your caring, thoughtfulness and consideration. I kind of think I made you mad when we met too! This is the “clash of worlds” – this is differing perspectives.

      I do not read what you say as condescending in any way. It is thoughtful and considerate.

  2. John Popham

    Hello Amy,

    I do not always agree with you. Sometimes I disagree with you. But I do believe in the clash of worlds – that the differing perspectives you describe are important. I believe that disagreements, the rational push and pull of ideas good for us even when (especially when) they challenge deeply entrenched ways of thinking.

    I am deeply troubled by the current the SF community toward labeling words and ideas with which they disagree as ‘damaging’ or ‘harmful’ merely because some members of the community disagree with them or are even offended by them. To call someone’s ideas damaging is nothing less than to attempt to silence the speaker – to say in an indirect manner that ideas should not be spoken, lest they do harm.

    Science fiction is not a safe place. In fact it is a place full of (if you’ll pardon me) dangerous visions and discomforting ideas. I salute you for having the courage to set in motion a clash of worlds, for daring to speak a different perspective.

    I may not always agree with you, but I salute you for being a daring and dangerous visionary.

    Respect. Godspeed.

    1. Amy Casil Post author

      Hello John, thank you. And I love your sign-off! How lovely for you to think to say this.

      I suggested another really awful and offensive idea to a friend the other day. I made an analogy of human society to individual children. I suggested that society might be like a pre-schooler who has just begun Kindergarten. And the pre-schooler was used to attending a very permissive pre-school where they (it grates the heck on me but I am going to teach the ‘word of the year’) could yell, scream, take toys from other children, and even kick and beat their classmates with no repercussions, and sometimes even rewards and praise. And now, their summer is over and it’s time to go to the real school, with some discipline and daily lessons.

      So the author of that wonderful book, Robert Fulghum, said “It doesn’t matter what you say you believe – it only matters what you do.”

      I think you must be ready to graduate soon, John!

  3. Amy Casil Post author

    Also, John, if you know anyone who is interested in going to space, we have hundreds and even thousands of the best minds working on the technological aspects, and even many working on the mechanics of how people would get along on long, isolated trips, from the Mars trip to longer.

    I do not know of anyone who is working on communication or project management skills for bringing off really huge projects. Nor do I know of anyone who is working on the social and economic changes required to reap the genuine rewards of human potential. Not the lousy job we do right now.

    This is what I spoke about in the end of the article.

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