The Path Leading Away From Hell – Continued

Yesterday when I began writing The Path Leading Away From Hell I knew halfway in, I wouldn’t have time to finish, but I plowed along anyway and at a certain point had to stop.  To pick up where I left off  – until recently finding a “cure” to my mind, was synonymous with helping Emma overcome all the things that caused her such pain and misery.  “Curing” her meant finding a way to help her read and write, figuring out how to help her with her GI issues, helping her with language and speech so that she might have an easier time making friends, helping her with her vast and varied sensory issues, helping her tolerate change, finding alternate ways for her to cope when she was overwhelmed so that she would not bite herself and punch herself in the face, helping her stay engaged and focused so that she might progress academically, helping her be in the world so that she might one day have the opportunity to live independently should she want to, surrounded by people she loved and who loved her.  I was intent on finding ways to help give her the tools she would need to travel if she wanted to, find a job and career she found interesting and close friends so that she might never feel alone.  These were/are my goals for Emma, and the word “cure” seemed to sum up all of these points, succinctly, in one compact word.

When I began reading blogs written by adult autists who objected vehemently to the word, “cure,” I was surprised.  At first I didn’t understand and reasoned that they objected because they were functioning at a much higher level than Emma is and does.  They spoke and articulated what they thought.  Emma cannot do any of that.  I felt sure that if they were unable to make their opinions and feelings known, they too would seek a “cure.”  But then I read some posts by autists who were not able to live independently, who had tremendous difficulty keeping a job, who found social situations impossible, yet they too objected to the use of the word “cure.”

I knew I was missing something, so I kept reading.  I wanted to understand.  I have always wanted to understand.  After days spent reading blogs and comments, many of which I’ve listed in past posts and some that are featured on the blogroll on this site,  I came upon an autistic woman who described two general types of parents, the first who wanted their autistic child to function as best they could and would do everything in their power to help them accomplish this and the second was a parent who wanted to cure their child of their autism so that they might have a “normal” child instead.  It was in reading her description that I began to understand, this wasn’t an argument about “cures” in the way I had understood and interpreted that word to mean regarding Emma, this was about the potency of words and how they can be used to dehumanize, discriminate and hurt.

No one was saying – Don’t help your child.  On the contrary, almost every single autist who wrote on the subject, spoke of the many challenges they faced and of the help they often required.  The argument was not about debating the merits or worthiness of who needed help, this was not a debate about needs, challenges, being non-verbal or verbal, being independent or dependent, the number that accompanied ones IQ or where on the autism spectrum one was.  What most of the autists I read objected to, was the use of the word “cure” because it implied who they fundamentally are, needed to be excised.

Many spoke of the shame they felt growing up, the alienation, and punishment they endured because of how they were perceived.  Almost everyone mentioned being bullied, being abused, being subjected to insults, derision and criticism.  All because they were autistic.  Add to that the various erroneous theories regarding autism and how autists lack empathy, do not feel as neuro-typicals do and you can begin to see how destructive this type of thinking is.  Dehumanizing and marginalization are the ways of war.  It is how people have justified acts of violence against others throughout history.  Dehumanizing autists with talk of “cures” and theories regarding how they do not feel are ways in which people can rationalize abuse.

It is human nature to want to be understood, to be listened to, and to connect with others.  But first there must be a conversation, a dialogue in which we all participate, in which each person is listened to and given the chance to voice their opinion.  Who knows, we may learn all sorts of things.

I certainly have.

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
To read my most recent Huffington Post, click ‘here.’

8 responses to “The Path Leading Away From Hell – Continued

  1. BEAUTIFUL, both the sentiment and the words used to craft it!

    You nailed the idea of not wanting to c*re autism. I have blue eyes – imagine if I had lived in a society that told me my whole life that my blue eyes, a fundamental part of who I am, needed to be c*red. Can you imagine the impact that would have on my psyche?

    So, rather than seeking a cure, let’s embrace, support and assist those with autism. And that my dear is precisely what you are doing!

  2. Very powerfully written Ariane. It never occured to me that I could cure my son and later my daughter. With Liam it was easier to accept in that it explained what was happening to him, why he behaved the way he did. Why the delays. With Roslyn it was frightening, because the onset occured later and I watched her unravel and withdraw from me and everyone around her. I watched her cry and sob as she could no longer speak, slapping her head in frustration. But a cure never entered my mind. It would be like expecting an amputee to grow another leg. It was just who they were. I just spent my time teaching them. Teaching them to sit down, to eat, to wait, to use the toilet, to play, to go out in public, to communicate in whatever way possible, to count, to recognise colours, to spell. I attended lots of courses on how to manage behavior and how to communicate, to try and understand why they do the things they do. I still do. I am off to a 3 day workshop next week. I have to. To be quite frank we can’t keep living the way we do. We are at great risk of actually losing services just because my daughter is so very autistic and has such high needs. As for therapies, well there was so very little of it here. We paid for speech therapy, found a muisc therapist (worked for Liam but not Roslyn) took Roslyn to Gymbaroo. Did the therapy myself. Now at 10 she does play therapy (literally learning to play) with an occupational therapist. ABA was out of our reach and to be honest I was not convinced it would work.
    The danger lies in not valueing people for who they are. For devaluing someone as somehow less. Even now I see so many people who feel the need to differentiate that their child has “high functioning autism” there is a stigma attached to intellectual disability.
    Ironically our son who was academically ahead of his peers who had autism has to attend a special school for the intellectually disabled because basically his autistic behaviours cannot be managed in our school system. He learnt to read and write and do arithmatic at home.
    What do I want for my children? For them to be happy and fulfilled. For mysef a little less screaming would be nice. For my daughter to be safe and not running away at every opprtunity. I dont expect to change how they interact and react to the world. They need to learn and to progress they need to survive somehow in this world.

    • Thanks so much for writing this Liz. I think one of the worst things that happened early on was being told by so many people that there WAS a cure. I think the people who said that were well meaning and believed it, but it make me feel that if I didn’t pursue these hypothetical cures and “accepted” that this was how Emma was, I was failing her. I wasn’t fighting for her the way these other mother’s were who were “recovering” and “curing” their children and therefore I wasn’t doing everything in my power to help her. It was very confusing to have these two camps, the medical establishment basically saying “get on with your life, there’s nothing you can do” and the polar opposite group telling us, “you can do this, this and this and she’ll be “recovered.” I have struggled for so long, for so many years with this and finally now, during these last few months have found this other way of thinking that has solidified what feels “right” to me. This other path feels so much less stressful. It doesn’t change anything, Emma is Emma. But I no longer feel compelled to chase down every link, every phone number people send me, always with the words, “he’s recovered a number of kids.” I’m done with that. I’ll keep doing as you are, teaching, training with Dr. Blank, trying to do everything in my power to help Emma with her various challenges. And yes, “They need to learn and to progress, they need to survive somehow in this world.”

  3. I think the “culture “is differnt here in Australia. We do hear of ‘recovery’ stories like Jenny McCarthey’s son but not as much as in the U.S. Plus a lot of those things aren’t available ere. Though quite often what we have in Australia is people leaving the country to get an education for their child with autism often to the UK. Too often though parents particularly mothers are made to carry the guilt though. It is like a hangover from Bettelheim’s “refrigerator mothers” only now it is “if only you did this for your child” or “you are a lousy parent”. It is time to let go of the guilt. Perhaps it is because in many ways autism is a disaility that does not mainifest itself in such an obvious physical way. It is the behaviors that people see.

    • I agree. I felt for a long time, if I didn’t do everything, try every remedy, potion, supplement, see every “specialist,” no matter how questionable, I was a bad mother. My feelings and judgments were very much self imposed. But there does seem to be a huge groundswell of opinion out there regrading parenting an autistic child, blogs, books, etc around this whole “recovery” idea. I think the danger in all of that is that what helped Jenny McCarthy’s son has not proven to help a large group of children on the spectrum. If it had, we’d hear about it. But the fact that she is a “celebrity” a great many people listen to her and think what she did, they too can do with the same results. Sadly this isn’t the case. In fact those children are in the minority and are quite rare, I believe.
      By the way were you ever able to follow up with Marion Blank? If you can, write me offline, I’d love to know how that went.

  4. Trying to arrange a phone call with her.

  5. I think what Charlotte says is reassurance for so many people. … A popular campaign a few years ago, here in the U.S., made having a child with autism seem so desperate, instead of just a little different. And that puzzled me as much as it puzzled me to hear how frustrated a parent was, decades ago, that his son seemed too restless to learn anything. The campaign, which included at least one magazine interview, seemed focused on the implication that a celebrity mom wanted so badly to be able to comfort and to speak with her child but couldn’t. And I think the campaign went on to imply that there must be some way to cure the child so the parant could communicate with the child normally. But the good Lord in Heaven knows how wrong an approach that was. Instead of that viewpoint, why didn’t the campaign focus on how persons with autism each have his or her own unique characteristics and how, being able to think and feel like anyone else, persons with autism shouldn’t be disposed of through what seems medically rational? That campaign should have been an opportunity to say to parents, hey, don’t be frustrated because he or she doesn’t respond like other children; but just treat him or her normally: reading colorful stories together, baking together (if able), walking in nature and discovering bugs together, helping enable and encourage experiments and extracurricular activities, carrying on normal adult conversations around your child, and so on. … That campaign could have said, parent, one day you may be surprised how much that little locked-in person has absorbed. And, maybe, that little one is going to grow up and make you (in a good way) proud. … P.S., When anyone has lived autism her whole life, and isn’t going into that field of medicine, it’s enough just to know, finally, how to explain what makes me a little different. Life is better spent just living to the best of one’s ability, and growing to know one’s Savior, than going through rheams of books to feel closer to understanding oneself! As to doctors who are erudite about fixing what is not broken, they’d understand better just by having maybe a friend or relative who has raised a child with autism. That would bring them closer to understanding, more than anything else. … I know that one of my loved ones is someone I’ve always seen as feeling and as human as I am, which is why it was enough for my grandmother to tell us not to laugh because … . And I repented that very moment and have revered my loved one’s feelings ever since, even feeling badly that a friend of mine was visiting her house at a time in her life when no such friend was visiting her. … But all things in this life work together, in time, for truth and good.

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