I have always feared being put somewhere against my will. Sequestered, hospitalized, institutionalized, these are abject fears I have had since I was very young. The idea that others would have control over what I did, where I went, what I ate, who I saw… these are more than just fears, they are like nightmares, too horrible to contemplate. My greatest fear when I went to see a therapist in my early twenties was that I would be put away somewhere, so sure was I that if my secrets were revealed I would be thought too damaged to live among my peers. I made my therapist promise that if I told him what was on my mind he would never allow me to be admitted to a mental hospital. It was after he assured me, swore he would honor my requests that I was able to finally begin telling the truth.
On Homeland (the Showtime series beginning its second season) there is a scene with the main character being committed to a mental institution, forced to take medication, her speech garbled and slowed, her facial expressions a slow motion blur of terror, rage and pain, her eyes wild, like a caged animal, while her intelligence burns bright. The well-meaning staff speak to her as though she were a child, incapable of reason, they tell her to calm down. They tell her to take deep breaths and count to ten. They doubt her ability to make decisions, they speak to her in voices cloaked in a calm-like veneer, their irritation still bleeds out, their condescension is palpable, their dislike for this person who is inconveniencing them is still vividly apparent.
And I thought of all the people we have met who are like those well-meaning nurses and staff. They do not view those who are neurologically different as equals, not really. They believe they have proof of this. They do not believe, even though they may say otherwise, that people who cannot speak or who do so intermittently are competent, capable of insightful thoughts, or have anything of importance to say. They alternate between ignoring the person, to speaking to them as though they were still a toddler. They are visibly uncomfortable. These are the people who have concluded that because someone cannot verbalize what they think candidly and with ease, they must not have anything of importance to say. Thankfully most of the people we meet who are like this have not devoted their lives to working with this population.
But now and then I meet someone who has. They believe they are doing a good thing, a noble thing. They believe they are helping. They believe that the people they are trying to help are living happier lives as a result. They believe this with all their heart. They give words, as though gifts, in grammatically correct sentences, believing people can be trained to say things and do things that will be understood by the majority of the population. They think that if they can force someone to stop moving their hands or legs or twirling bits of string that the person will be better for it. They do not consider that this may be detrimental, that these actions are necessary to their concentration, that they will actually learn more and be able to concentrate better if they are allowed to do these things that are seen as unusual.
As I watched Claire Danes in the role of Carrie Mathison, I felt that old familiar terror I used to feel when I imagined if people knew me they would believe I needed to be put away somewhere and locked up. I was reminded of all my old fears that who and what I was, was broken and needed to be fixed and that I was not like others who seemed so pulled together, so calm and happy. On the show, Homeland, the more Carrie tries to convince the staff that she is fine and calm, the more out of control she appears. Having to prove oneself as competent is a difficult, if not impossible thing to accomplish, if those you are trying to prove to, already have made up their minds to disbelieve.
Emma's Hope Book 
It’s scary.
I wonder if what people fight against in our autistic behaviours are their OWN fears of not being seen as competent?
People make that claim about things sometimes. I am to forgive people for acting in demeaning ways I am told because it’s apparently a product of the insecurity I generate… If it is their own fears or feelings about themselves they should work that out on themselves not on me or you or Emma etc… Sadly I think it is more about the stigma of autism and the fact the most powerful lobbies have a financial stake in keeping it very dreaded and very awful in the minds of all.
Gareeth – that you are being accused of causing others to feel insecure makes me sputtering mad.
I do think the large organizations that have so much power have an awful lot to lose if they loosen their grip on all that rhetoric they’ve spent so much time and money getting out there.
They have everything to lose and nothing to gain. Since they currently don’t benefit real people any tangible way it makes me really sad that people don’t look closely at the financials before they decide to say use their star power fgr evil because every other actior is and every hospital show has their posters up and the one show that isn’t science fiction that families were so happy for because of a maintream portrayal of AS went with a fictional family who shils for them to. While when I was on a mission to take up Max’s total lack of growth over the seasons on a developmental level (last season I got sick of the pathos of dying mom paired against savage autistic teenaged couch monster…) I said a far more realistic plot line given what has been said about the character’s abilities (but not shown) would be for him to discover what the primary funding objective of that organization was and to ask some emotionally charged questions about what had his family been doing donating shoes and running races…
Today I had to spend what seemed like way too much effort to get my shrink to understand that his being the only consistent thing in the past 20 months it seemed a little foolhardy that he kept referring me to a form of support that would require a change. Four times he has agreed to respect my wishes but he claims he is damaging me. I think he gives himself too much credit there as I pointed out my current state was entirely predictable based on the usual impact on stress and my functioning and how that interacts with everything else. This seemed to finally get through but I am pretty sure we are not done.
You point out what has happened during the time I was on the “wrong ward” for him (3 doctors in the remaining 2 months) or in my entire life history of people being called in for grim consults and dictating totally stupid things within ear shot of me. I am supposed to take my chance on a doctor who could find only one redemptive feature about me again? I wasn’t aware I needed redeeming but oh well.
The world has been a horrible place but even so I don’t understand why it is so hard to get that changing the only constant thing and a thing that is right up there with what caused the tailspin they may as will deploy a nuke on me. He is an ethical man but it seems we will have this fight every time I see him… No one seems able to see this as a clear cannot not will not. I did have to point out to him given I see him for an average of 45 minutes a month his notion I was overly dependent on him was really not too plausible and anyone who had become that constant would be in his situation. That should have bruised his ego enough to lay him as the centre of my universe to rest…
I think it stems from ignorance and not wanting to think about anything that jives with their world view. And maybe there’s an element of power in all of this, liking that illusion of superiority, clinging to it, which one sees in all prejudice… I don’t know.
I’m just… I don’t know. I’m afraid a lot of parents will take offense when I say this. But genetics is a thing. And I recognise so much of myself in a lot of parents. Maybe not full spectrum, but definitely traits. And I recognise that fear and anger and stubbornness and NO THIS CAN’T BE HAPPENING TO ME I HAD IT ALL UNDER CONTROL IT WAS SUPPOSED TO BE PERFECT. And I think that is what has us all reaching across the divide, trying to connect, trying to be heard, and getting so upset and angry when we’re not succeeding.
Erm. Yeah. I’m fully prepared to face the wrath of the community now. I hope.
I mean I hope I’m prepared. *hides under blankets*
Aw… (((autisticook))) I don’t see anything offensive about any of your comments. Genetics?! Um. Yeah.
Wrath?! I would be – I *am* – PROUD to think that I probably have some of those autism genes, and passed them on to my son. I just think he is so coo and amazing and fantastic and fun and (insert superlative here). But perfection and perfectionism…not so much. That is something I believe we all need to resist.
Reading your posts and all the comments especially from all your friends on the spectrum cause me to remember all the interactions I have had over the years trying to pursue ways to best help Brooke, now 20 yrs. Old and basically non verbal. About 15 yrs ago a pediatrician enlightened me to the real world of what he thought and probably other professionals esp. At that time(late 90’s). I wanted to pursue an alternative treatment for her and I wanted to know his thoghts. He informed me that if it concerned a sorethroat or a fever then he could treat her otherwise it was out of his area. I said, but I have research articles for you to read and give me your opinion. He told me he didn’t have time. Basically as harsh as he sounded that he didn’t care in the long run it truly helped me choose who I took Brooke to and how I dealt with them. There were a few years early on i would do the research, present my case and I could just tell the Dr.’s what I needed and they would give it to me just to shut me up. That was the compassionate ones. The others were not affected by autism therefore didn’t have an interest in helping me. My soapbox and experiences/ thoughts are endless. (Brooke’s Mom) That does not even include the school experience. Ugh!
Your comment reminded me of a doctor I was referred to who, upon hearing of my daughter’s diagnosis said to me, “Trust me. Get on with your life. There’s absolutely nothing you can do for her. Just get on with your life.” I’ve never forgotten his words. I couldn’t believe it. This was from a guy with a medical degree who was the father of an Autistic kid.
So this is me getting on with my life! Little did he know I would take his words literally, though I doubt this blog and what I write about is what he was advising!
I know I defiantly do
Autistic cook
I keep threatening to recycle an ancient post of mine about extinguishing behaviours without questioning their utility. You are correct that a lot of well meaning people never give it a thought. One huge drawbback of therapist not being a protected word in most areas is that people without the education to fully realize what behaviour is claim they can treat things behaviourally. Behaviour therapy does work but the casual and brutal application of it by the seemingly clueless has done much harm. When I say work I mean that it has the strongest chance of meeting the intended goal which is unfortunate when the goal has not been well thought out.
I cannot imagine a life where proving competence were not ongoing. I am in the strange position of having in a one week period tested three standard deviations (at least) above the norm for most of my IQ and three standard deviations below for he things that constitute being competent at life it seems. But even without the stark numbers to add weight to their arguments it was a constant thing. I missed a board meeting because I was throwing up but when the President calls to ask me if I was sick that’s not the kind of sick he is tip toeing around asking me about. I will see my doctor today and and any day I see him can end in separation from my dog and computer even though he is currently claiming to recognize the error of his ways,
I wish I knew what it were like for this to be a fear and not a reality. Only total strangers can gaze upon me and not question my competence and then it seems only if I stay silent and unmoving just in case.
“I wish I knew what it were like for this to be a fear and not a reality. ” That, Gareeth, is exactly the thing about all of this. For me it is a fear and however legitimate it is not the same as having to defend myself against this kind of treatment every, single day, the way you and my daughter must. Which is why I won’t stop writing about this, even though I fantasize about doing so. I won’t. It’s not much, but even if it changes a few minds, even if only a couple of people begin to rethink what they have been told, then they will change a few minds and those people will and on it goes until a great many will be swayed. Or so I keep telling myself and hoping…
I know your feelings here so well: you have touched on one of my own fears with this. It was only with great difficulty I managed to keep a lid on my incipient terror as I read the opening paragraphs. I had a period in my life when I came close to being taken into “care” and even at the age of 13 I felt that the psychologists failed to treat me as rational or competent. They acted condescendingly, as if I were incapable of understanding what they said to me, spoke to my parents in front of me as if I weren’t present.
I once visited my step-son when he was confined to a psychiatric unit and many of the patients were so heavily tranquilized to make the staff’s lives easier that they could barely function, my step-son included. It was a heart-rending experience and I was so relieved to get away from the place. The thought of being in a similar situation against my will terrifies me.
Oh Ben… I’m sorry for that. What a horrible experience. I can’t imagine. Well, I can… it fills me with terror thinking that this might have happened to you.
I realized I should have written a trigger warning at the top, though I’ve not done that before, but maybe this post I should, do you think? Would it have helped? I don’t want you or anyone to be triggered.
To be honest the strength of my reaction surprised me, so I don’t think a trigger warning would have stopped me from reading on. There is no need to apologize: these are my demons and I chose to face them by continuing to read your words.
That’s how I felt watching Homeland the other night. I was taken aback by my response. Sending you hugs.
Thank you. *hugs*
Omg, this. I also see it sometimes when adults are speaking with children. It’s as if the children have nothing to important say either!
It also reminds me of one incident where I was bullied. I told my guidance counselor what was going on, all the details. I think I implied that she was stealing my stuff, so maybe I wasn’t clear, but he just brushed my concerns off and said, “Are you sure you’re not just having a fight?” Granted, he didn’t know how to recognize bullying at the time, but he just jumped to conclusions without understanding what I was trying to say.
I think people fight against what’s different or unclear, because they don’t want to admit that they simply don’t know what to do. That or they really are condescending people!
I think you’re right and that often people just don’t have a clue. We a few people who routinely see my daughter and ignore her or talk to me about her. I don’t think they mean harm, they are uncomfortable with themselves and are in general and don’t know what to say, so they say nothing.
I am saddened to hear the struggles here to be seen as a whole competent person. You are so right, in many of these situations the teachers, doctors, therapists just believe so much in their noble calling and their perspective that they don’t even see a whole person in front of them.
One of the problems, I think, is the notion in the general public of “noble professions.” Teachers are noble, doctors are noble, etc. — these professions sometimes attract people with egos to feed. Because if you are being noble, you are helping someone who must be “less” somehow. I wonder if they can ever imagine themselves in their client’s/student’s position.
To “autisticook” — you are spot on. As parents, my husband and I always say our little apple is right off of our tree. We see so much of ourselves in our daughter and in her struggles. It helps our relationship with her. And it helps us all to know how to deal with the noble professionals who make judgements and fail to see individuals, then hide behind “good intention.”
My love to all of you; may we continue to help and support each other.
Dee, what a lovely comment. Thank you so much for leaving it here!!
Ariane, I am so happy to hear that you won’t stop! Since I have starting reading your blog about a year ago so many of my ideas and perceptions of my daughter have changed. You have brought me so much valuable insight from the blogs of Autistic adults and your own experiences as well. I used to think (from what the “professionals”) told us that speech therapy was the most important thing for Olivia. I, like you am realizing that although she has some words, there are many other areas that are more important for her. OT, communication and literacy are my focus now. As well as nature, swimming, gymnastics etc. 🙂 you have helped me see my daughter more clearly for who she is and what she loves about life. I look forward to the time when she can type what she is feeling as Emma is now. Thank you Ariane for not stopping!
This means so much to me and I’m so glad you feel this way. 💕
Well . . . hmmm . . . I am no judge, but you do know a phenomenal walk. Thanks for letting me walk a mile in your life. Life is simple. People make it complex. I head home soon, thankful for all the beauty and kindness I’ve found in NYC.
So glad to share one of my favorite stretches of Manhattan with you! Can’t wait to see photos…
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