April is Autism Awareness Month

Last night Georgia Public Broadcasting showed a documentary called Autism: Coming of Age. It focused on three adult autistic men. One was non-verbal, lived with a roommate and spent his time helping his grandfather with projects. Another spoke with a monotone voice and lived at a special boarding school that taught basic job skills. The third man was 31, had a pleasant voice, was fascinated by vacuum cleaners, worked vacuuming hotel rooms at Marriott, lived at home with his parents and hoped to one day have his own family and home. In each case the parents worry that these men will not have the support they need in the future.

***

I have e-mailed an autism research center several times. They keep responding by requesting my phone number but do not call. This has been going on for months. I have even called and left a voice mail. Finally, someone calls me about a week ago. I explain that I’m interested in an evaluation for myself. Even after I say this she continues to interact with me in a chatty manner. This confuses me but I respond in kind. After the call is over I realize she must deal with more parents of autistic children than with autistic adults. I imagine the parents find her manner reassuring. I find it annoying. She gives the information I originally requested two months, but not over the phone. She e-mails it to me.

I call one of the psychologists the lady at the autism research center refers me to, and leave a message. When the doctor calls me back she keeps questioning my motive for wanting an evaluation. If I’m working and living with roommates, I must be doing pretty well, she says. I tell her I need to develop better coping skills, and to do that effectively I need an accurate diagnosis. This seems to confuse her. She rather cryptically explains that if I want more than just a yes/no diagnosis it’s more work for her, and would cost me more money. I am confused by this, and restate that I simply need an accurate diagnosis to develop appropriate coping skills. I ask her if she provides on-going counseling for adults with autism, and this seems to confuse her, but she says yes.

Replaying the conversation in my head, I come to the conclusion that she thinks I want disability benefits, even though that’s a very different goal from my stated objective. I don’t have a lot of money to spend on doctors, and I don’t feel very confident that this doctor is interested in helping me. I discuss the conversation with autistic adults, who share their stories of dealing with strange and unhelpful psychologists. One notes that working with a psychologist is an expensive experiment.

***

I’m about 17. I have finally distilled the awkward behavior of my childhood into tools, rituals. I sit cross-legged on my bed, in a darkened room. I have headphones on and I’m rocking back and forth, not necessarily in time to the music. My head moves back and forth. My hands flap, or they tap my legs, ankles or bed. Naught but silence can be heard outside my room, with the exception of an occasional squeak of mattress which can be attributed to restless sleep. I will do this for about an hour, and when I am done I will feel better, more relaxed and less stressed. No one knows I do this. It is my secret. I would die if anyone saw me do this. Because I know there is a word that would leap first to their mind to describe the way I move: retarded.

***

I feel at ease with my roommates. It is a rare thing for me to feel so at ease around people who are not my family. Only, to be honest, my roommates are nicer to me than my family. I have tried to analyze why I feel at ease with them. I have come to realize it’s several things. They are Pagan, and so I feel comfortable referring to my faith around them, and they know all about my work with Patheos. Also, they are native to the South and enjoy Southern culture, and I find that comforting in a world where so many people move to Georgia from out-of-state and our native accent is disparaged. The way they interact with each other, and with me is somewhat predictable. Maybe that sounds deathly dull, but it’s not. They are funny, kind and passionate people, but there is a sense of stability in their lives and manner that is comforting to me.

But maybe one of the reasons I feel at ease is they  take me as I am. I helped to clean the house when they had company coming to visit, but when the company came I couldn’t leave my room. Just the thought of having to interact with so many new people and the social variables involved left me exhausted. It’s a strange thing to be able to randomly plop down at a table with Erynn Rowan Laurie and Diana Paxson at a big conference and engage in conversations regarding various stripes of Paganism, and quite another to sit through the social pleasantries involved in meeting a group of people and explaining where your family is from and what you do for a living and isn’t the weather nice?

My roommates just accepted that I needed that time alone. I used work as the excuse, and I’m fairly certain they knew it was an excuse by how they accommodated it. They have a houseguest now. It’s just one person, but that person is staying for several days. I am uncomfortable with the situation but I can handle one person.

***

I have found some comfort in interacting with autistic people online. Some are diagnosed. Some are self-diagnosed. Some, like me, are seeking an evaluation. Some of the people I interact with tell me they are non-verbal.

What I find most comforting in interacting with them is that I can have a productive exchange them that isn’t crouched in emotional terms or based on social politics. When I write this blog, for instance, I tend to take on a voice to give my writing more emotional flavor. Sometimes I think I would like to be the kind of person that writes and speaks that way naturally, the way most people do.

I find it interesting to see the difference between how autistic adults speak of autism and how parents of autistic children speak of autism. The parents of autistic children are struggling with something they don’t understand and can’t quite grasp. Many are interested in finding a cure for autism, but autism isn’t a medical defect. It’s a different neurological makeup which affects slightly over 1% of children in the United States (based on an estimated 76 million children in the US). I was only able to find an estimate that half of those diagnosed with autism also have a low IQ. 2-3% of the general population also has a low IQ, a far greater number than those diagnosed with autism.

Autism Speaks came under fire for a film in which Alison Singer describes contemplating murder-suicide simply because her child is autistic. As I watch this video of Singer’s child I can see my own nephew’s behavior reflected, and he is a fantastic kid. The fact that Autism Speaks promotes these types of views and advocates for a cure, as well as clinging to the disproven theory that autism is caused by vaccines, makes them a negative and unproductive organization in the eyes of some autistic adults.

As I contemplate the idea that I am autistic, and as I consider my nephew, who is a marvelous kid, I find the idea of being cured a bit insulting. I find that I’m not angry at the idea of being autistic. What I am is a unique expression of humanity. To cure me suggests that people like me shouldn’t be born. That the interesting and fascinating autistic adult writers I have been reading shouldn’t exist. And as I wonder about my nephew, who has had significant trouble in school despite being a smart, kind and funny young man who doesn’t like to look you in the eye, well…. anyone who tries to cure him would have to get past me first.

***

I am 30 years old. My roommates went out to dinner and see Wrath of the Titans with their houseguest last Sunday. I had the house to myself for a few hours. I fixed myself dinner, and sat down to watch The Big Bang Theory.

I only began watching the show because I was told Sheldon Cooper, one of the main characters, is autistic. The writers deny this, although the actor who portrays him feels it’s pretty obvious. I didn’t like Sheldon Cooper at first. I thought he was shameful. I thought he was a disgusting and inappropriate caricature. But I kept watching, and eventually realized that how I initially felt about Sheldon was how I felt about my own quirks. My rocking and tapping. My social difficulty even now, after decades of trying to improve myself. My sensory overload issues. My intense need for the world to make logical sense. My deep and abiding love for the strangest things.

I began to love Sheldon. He has become a hero of sorts to me. He is who I secretly want to be, freak flag flying high. I take immense delight in him, as if he is my inner child that has finally been let out to play.

I watched The Big Bang Theory and laughed heartily. I did the dishes. I cranked up some music. I rocked, I flapped, I tapped, not necessarily in time to the music. About an hour after I turned on the music my roommates came home. I was calmer, more relaxed. I think they may have felt bad about going out without me, even though I wasn’t interested in seeing Wrath of the Titans in the theater. But I had a marvelous time, being able to be fully myself, all alone.

About Star Foster

Polytheistic Wiccan initiated into the Ravenwood tradition, she has many opinions. Some of them are actually useful.

  • Grailbearer

    I am the mother of an autistic son, and the wife of an autistic adult–and I should like to say that not every parent thinks that way about autism. I did a lot of research on autism, read a LOT of papers published in psychiatric journals when my son was diagnosed. The understanding that I came to was similar to what you have stated here–that those who have autism process information in a different way. My son, and my husband, have both been tested as off-charts intelligent (at least 140+), and not in one singular area, but across the board. I know that they are not unusual or unique; I would hazard to guess that many non-verbal autistic people are equally brilliant, but are unable to express themselves in a quantifiable way. I can’t even conceive of attempting to “cure” autism. Perhaps then we should “cure” genius, or creativity.

    One of my husband’s favorite poems is Edgar Allan Poe’s “Alone” because he says that that is how he feels–that Poe has expressed accurately the way he perceives the world. He was diagnosed as an adult because in the US one must have one’s diagnosis to receive reasonable accomodations under the ADA. Trying to perceive the world as my son does, as my husband does, requires tremendous effort and patience and even then I feel as though I “see through a glass, darkly”; that somehow I am failing to grasp what is easily cogent to them.

    I write you this only so that you will know that there are parents who fiercely love their children, and count not autism as a disease that must be cured. I view this month rather as a time to teach understanding and acceptance of that which is different, or other.

    Alone
    by Edgar Allan Poe

    From childhood’s hour I have not been As others were; I have not seen As others saw; I could not bring My passions from a common spring. From the same source I have not taken My sorrow; I could not awaken My heart to joy at the same tone; And all I loved, I loved alone. Then- in my childhood, in the dawn Of a most stormy life- was drawn From every depth of good and ill The mystery which binds me still: From the torrent, or the fountain, From the red cliff of the mountain, From the sun that round me rolled In its autumn tint of gold, From the lightning in the sky As it passed me flying by, From the thunder and the storm, And the cloud that took the form (When the rest of Heaven was blue) Of a demon in my view. 

    • http://www.patheos.com/ Star Foster

       I don’t think all parents think that way. I’m sorry if I implied that I did.

      That is one of my favorite Poe poems, along with his poem to science.

  • http://twitter.com/ouranophobe Áine

    Our society has a very interestingly dichotomous attitude toward conformity.  We applaud success, so long is not too successful.  We embrace and celebrate iconoclasts, so long as they stay within certain boundaries.  We yearn for the superlative and content ourselves with the belief that *anyone* can achieve x, y or z if they just work hard enough.   

    … and when it comes to seeing the world through a different lens, one through which we, ourselves, cannot so much as *hope* to peer, we shrink away.  We develop diagnostic criteria for the “disorder”.  We formulate pills, create “therapies”, cry out against vaccines, develop new technology, all to “enable” the person with this so-called “disorder” to bring themselves round to the manner of seeing / functioning / being that we have accepted as “normal”.  

    The time I spent with psychiatrists trying to find the appropriate label to apply to the set of outward behaviours I exhibit that others find troublesome was a perplexing, frustrating and at times frightening experience for me.  I am saddened that your search for tools is proving so frustrating and I hope you are able to find what you need.Thank you for sharing this.  Thank you for taking on the vulnerability.  Thank you for helping others to see themselves in your mirror and know they are not alone.

  • http://kauko-niskala.blogspot.com Kauko

    I’ve thought about looking into getting a diagnosis about whether I might be autistic as well, but money is really, really tight right now and I don’t think I could afford it. I’ve discussed it with some family and close friends and they think that I might well be autistic.
    I couldn’t imagine living with roommates, just the thought feels unbearable to me. I was forced to share a room with one of my brothers up until I was 15 and I always hated it. Then my older brother left for college and I got to move into his room and it was heavenly. I have an intense need for solitude and I get very difficult and start ‘acting out’ if I can’t meet that requirement.
    You’re description of sitting alone in your room with headphones on hit home for me. I used to do something similar. I would close my eyes and tap the 3 middle fingers on my hand along with the syllables of the words being sung. I don’t remember when I stopped doing that, it might have been when I was diagnosed with and medicated for OCD (and the drugs I took for that were almost worse than dealing with the OCD).

    That Poe poem has been one of my favorites since I first read it as a teenager. I seem to recall that I printed it out and had it hanging on my wall back then. 

  • Limnaia

    I can empathise with a lot of what you’re saying here, Star. All I can say is best of luck trying to get a diagnosis and that you should be proud of yourself for coping as well as you have thus far. (Also, the idea of curing autism is utterly ridiculous.)

  • Windweaver

    I have two sons that are Autistic. My oldest, Sean Is five years old and just starting to speak. He also is, according to his teacher, extremely intelligent. She Says the same thing about Dylan, my four year old, who is also in her class. I also am one of those parents that looks at talk about “curing” Autism with a shake of the head. When will people understand that it’s not a disease, but a different way that the brain is wired.

    My sons can’t communicate in the same manner as other kids their age, but they learn things MUCH faster because of the way their minds focus. I would not trade my Autistic children for any child that has ever existed. They are uniquely themselves, and I would have it no other way. Of course I’ve never really fit into the “box” they try to put us all in myself.

    We live in a society that is constantly trying to stuff us into a mold so that we will “fit in” to the perfect picture puzzle that they’re trying to create. All the time they’re doing this they’re praising originality and individuality, all the while not meaning it. Every time someone doesn’t fit in the mold, they have a disorder or psychosis, that must be treated with some form of medication that will make the pharmaceutical companies rich.

    I have always refused to let them stuff me into the mold, and won’t let them shove my kids in there either.

    Just be yourself, if society doesn’t like it, that’s their problem.

  • LezlieKinyon

    Hi- It is incredibly hard to obtain resources and support for autistic adults.  There is some hope, during the on-going family quest to find support for my adult autistic brother, we discovered this organization: 
    Autism Speaks http://www.autismspeaks.org/

    They are somewhat helpful in finding resources, however, you are correct in the assessment that they spend far too much time discussing a potential “cure” and going on about vaccinations. A good percentage of the available information is about children – this does make sense considering the upsurge in children diagnosed with autism spectrum disorders.  The current generation of parents have a lot more to assist them. Unfortunately,  already diagnosed adults don’t seem to be getting the attention. Three is a
    is a somewhat informal network of families & siblings seeking assistance for their relatives. Just keep looking. Love to you. This is a tough nut to crack.

    • http://www.patheos.com/ Star Foster

       They are a terrible organization, as you would have noted had you read my post. I am not a fan.

    • Grailbearer

      I am not sure if you are aware of this group, but I think they might be a better resource for Autistic adults.

  • LezlieKinyon

    BTW – my brother is at the other end of the “spectrum”:  only partially verbal, not social, obsessive, and developed untreatable grand mal/tonic clonic seizures at 15. 

  • Ywendragoneye

    Thank you Star – you show great courage to be so open in order to help others. Blessings to you and I hope you find the answers you seek.


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