Autism is Not a Mental Prison
Earlier today I noted that this is my idea of a nightmare. Some consider life with autism, and autism itself, as a “nightmare” (”Autism: Nightmare Without End” is the title of a 1981 book by Dorothy Beavers). I do not consider autism, life with autism, being the mother of an autistic child, and most certainly not my autistic child as a “nightmare.”
“Nightmare” is only one of many negative metaphors that are still used to describe autism. Another one is that of a prison: According to this metaphor, there is a normal person “imprisoned in a world constricted by autism” and locked away inside a “shell” of autism. The title of Bruno Bettelheim’s 1967 The Empty Fortress: Infantile Autism and the Birth of the Self refers to this metaphor—-and so does a June 29, 2007, article from Fordham online:
“Autism is a spectrum of developmental disabilities that strike early in childhood that can interfere with the ability to communicate, learn and form relationships, locking some young people in a kind of mental prison.
The article is about an April 27th autism conference held at Fordham University in New York City—-Fordham is the university where my husband Jim teaches; it is where, on October 27, 2006 a different autism conference that he organized was held. The name of Jim’s conference was Autism and Advocacy: A Conference of Witness and Hope and you can be sure that no reference was made to autism as being “a kind of mental prison.” In fact, Jim’s introduction began with a description of how he taught Charlie to ride a bike; of how he thereby has given Charlie a kind of freedom, to take himself places via his own effort.
Now that the weather has cooled off, I think there is a bike ride in store for Charlie and Jim this evening.
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POSTED IN: Autism Advocacy Conference, Metaphor, Parenting, Sports
16 opinions for Autism is Not a Mental Prison
laurentius-rex
Jul 13, 2007 at 8:25 pm
You have been tagged http://laurentius-rex.blogspot.com/2007/07/silly-games-eight-random-things
Harold L Doherty
Jul 13, 2007 at 10:00 pm
Yes, it is critically important to autistic children and adults that we not speak any of the negative truths about autism disorder, that we all speak of the joy of autism and hide the truth, and while we are at it hide those autistic persons who do in fact live less than joyful lives in autistic care away from public sight.
Let’s not face autism reality and try to help our children in a meaningful way. Don the rose colored glasses one and all.
Kristina Chew, PhD
Jul 13, 2007 at 10:35 pm
I hope you might be able to attend the next autism conference whenever Jim is able to organize one! We had hoped that Charlie might make an appearance at the end of the conference in October, but there was not enough time from when he got off the bus after school to make it into NYC. (And, also to be really truthful, he and Jim did not go on a bike ride tonight, but will this weekend.)
Rochelle
Jul 13, 2007 at 10:46 pm
I’m reminded of a parent’s statement in the Today show series on autism (available on the Autism Speaks website):
My son became this person “without a soul.”
There are plenty of metaphors that describe our children in negative, fatalistic, demonic ways–each neither productive nor accurate.
Rochelle
Jul 13, 2007 at 11:03 pm
To the group:
Please remember to thank Harold for reminding us of the trials, hardships, and frustrations that we’ve experienced in life because of ASD. He has taken it amongst himself to speak for us all, to remind us all that we don’t know the “truth” about autism. And, for his constant (deeming, presumptuous, and arrogant) reminders, we should all be eternally grateful. After all, we’re so silly that we need to be reminded that we have no idea of the “lack of joy” that autistic adults and children experience.
Because if it weren’t for his constant reminders, I might’ve forgotten the sheer panic I felt yesterday when my son jumped into the deep end at the community pool and had to be saved by the lifeguard.
Or, if it weren’t for his constant posts, I might’ve forgotten about the woman scolding me at Blockbuster for my son mumbling to himself and playing with a doll at his age.
Thank God, I remembered to take of my rose colored glasses today or I might’ve missed seeing my son dart into traffic.
How on Earth have I managed to get to where I am today with these damn rose-colored glasses and this pervasive optimism and hope?
Kev
Jul 14, 2007 at 5:16 am
Good grief Harold, you really don’t half speak some old twaddle sometimes.
Truth is, autism has both good things and bad things but then - what doesn’t? Not everyone elects, as you seem to want people to do, to see the glass as a half-empty pint at a local pity party.
Harold L Doherty
Jul 14, 2007 at 5:29 am
Thank you for introducing me to the concepts of “pervasive optimism and hope” Rochelle.
I never tire of having the rose colored glasses autism brigade enlighten me on the positive human qualities lacking in those of us who believe it is important to tell the the wold the whole truth about autism. Surely we can not possess your qualities of “pervasive” optimism, hope and love of our children that you are so fortunate to possess. After all we can not tell the whole truth and still have hope can we? Nah.
Kristina Chew, PhD
Jul 14, 2007 at 10:06 am
Pervasive optimism, not otherwise specified…….
Kev
Jul 14, 2007 at 10:56 am
“those of us who believe it is important to tell the the wold the whole truth about autism.”
I’m not being facetious here Harold but I have never seen you tell the whole truth about autism. What you do, as all bloggers do, is relate your truth as it seems to you.
Certainly you have ridiculously (and repeatedly) told untruths about proponents of neurodiversity.
What I believe Rochelle was trying to point out to you was that you don’t hold any sort of monopoly on truth and/or accuracy. You obviously believe you do but you really don’t. No amount of sneering pompous platitudes from the safety of your high horse will change that.
Rochelle
Jul 14, 2007 at 12:45 pm
Golf clap, Kev. Golf clap.
Now, if you don’t mind, I’m going to go back to searching for this “Whole Truth” that I keep reading about. Because, I’m such a silly, silly little girl–apparently, I’m living in the land of “My Truth” which is wrought with “Partial” and “Half Truths.” I need to find my way to the “Whole Truth” where Harold has all of the answers. It must be hard for Harold to know everything that the rest of us choose to not to see while we sun ourselves while wearing our rose-colored glasses. (Should I drink the Kool-Aide, too?)
Thanks for the enlightenment; Harold opened my eyes. If it weren’t for Harold’s “pompous platitudes,” I might’ve forgotten that I am not supposed to relish cleaning urine and feces from the upstairs bathroom walls and sink. Or, that I’m not supposed to elated with a second grader still struggling with incontinence. Silly me. Thanks for reminding me that autism sometimes isn’t fun. I completely forgot.
Ian Parker
Jul 14, 2007 at 1:27 pm
I’m not sure of the logic flow from taking issue with words like ‘nightmare’ and ‘mental prison’ to “it is critically important to autistic children and adults that we not speak any of the negative truths about autism disorder, that we all speak of the joy of autism and hide the truth”.
I also don’t see why some of the ‘negative truths’ need to be communicated with pejorative language. My recently turned four year old daughter’s diagnosis is ‘autism – at the severe end of the spectrum’. I have no issue with stating that, or describing some of the challenges she is working to overcome, when this is appropriate (and it is not always appropriate). What I disagree with are one-sided portrayals that inaccurately label or depict children with ASD - and by implication my child – as ‘imprisoned’ or a ‘nightmare’ inflicted on us and potentially on others. While parenting her definitely has its challenges, including specific challenges related to ASD, she is not a ‘nightmare’ by any stretch of the imagination. And descriptions that use words like ‘nightmare’ or ‘prison’ may lead those who do not understand autism to see her not as she is, but instead to expect her to be like they have been erroneously led to believe. This does absolutely nothing in terms of their willingness to accept and accommodate her. Instead, it might lead some to avoid or reject her when they see her coming. At a minimum they may be wary of her, and on their guard. And how does this help her?
After her IBI my daughter sometimes likes to go to the drug store down the street and look around. While a couple of the staff are a bit wary, most quite genuinely welcome her. I wonder how our reception would be different if they had been led to expect her to be a ‘nightmare’.
I would suggest that an honest and accurate portrayal of ASD would convey both the good and the bad: the abilities to communicate, interact, and learn and the often great difficulties encountered in doing so. It would show that our children have difficulties to be endured, mastered and overcome, and would make the case that with assistance – deserved assistance – that great things can be accomplished. But it would also make the case that they are human beings, worthy of consideration and respect.
Whatever effort I put into helping my daughter, the efforts required of her will greatly surpass mine. In making those efforts, she deserves respect. Labeling her as a ‘nightmare’ or as in a ‘mental prison’ does not help engender that respect.
Rochelle
Jul 14, 2007 at 2:53 pm
Nicely put, Ian. Particularly: “Whatever effort I put into helping my daughter, the efforts required of her will greatly surpass mine. In making those efforts, she deserves respect. Labeling her as a ‘nightmare’ or as in a ‘mental prison’ does not help engender that respect.”
Couldn’t agree more.
Niksmom
Jul 14, 2007 at 3:23 pm
Beautifully said, Ian.
Bink
Jul 14, 2007 at 6:40 pm
Thank you, Ian.
TheKLF99
Aug 19, 2008 at 2:56 pm
Having autism isn’t a nightmare. I have Asperger’s syndrome, the only nightmare for me that I am so annoyed about is that it took until I was 25 to be diagnosed with it. I went through primary and high school being told I’d got a high iq but they wished I’d use it and stop being so hypo, and getting told I had ADHD and that I’d grow out of it. Then I went to college, survived just about at college luckily our lecturer at college was very understanding as I used to regularly hand in assignments late, due to lack of support. Then at University I failed the degree just because I couldn’t cope, I was then given an option by the LEA I could repeat the year if I’d failed due to a disability, otherwise I’d have to stick with a HND. I didn’t realise I had Asperger’s (and also was quickly developing anxiety attacks) and so had to settle for the HND. Now finally I’ve been diagnosed but because of the fact that with autism you do things without thinking I wasn’t in proper control of my finances and have now run up massive credit card debts due to being misdiagnosed at the beginning. In addition to this I struggled in getting a job in computing which is what I studied after Uni as not being aware of it in interview situations made interviews absolutely impossible. Thankfully now I’m aware of my problem and am a lot more careful but it’s possibly going to take me a lot more years to re-sort my life back on track after being diagnosed so late, the only other problem I’m faced with now is that despite having a HND in Software Engineering I’ve got to put up with low minimum wage jobs because I was allowed to get into that habit. I am also now 30 so I’ve also missed most of my chances of getting a business started with these young enterprise schemes. It really does annoy me that those idiots at the NHS took so long to diagnose me.
Kristina Chew, PhD
Aug 19, 2008 at 3:00 pm
thank you—-hope things keep improving.
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