I cannot stop thinking about one of the Autists who commented on my latest Huffington Post piece. He is Autistic and is unable to function without the support of his family. He writes about his wish for a cure. He writes about his short-term memory, his “lack of visual-spatial and motor abilities, inability to interact with others in basic interactions, weak attention span, processing speed, reaction time…” He writes, “If I had skills and could really absorb knowledge, I’d have some kind of a career and I would do basic things without my family all the time.”
Before I responded to him I reached out to some Autists I know asking for their thoughts. Some people responded, for which I am grateful. Steve, diagnosed after his child was diagnosed, thoughtfully provided me with a number of links and introduced me to Amy Sequenzia, a non-speaking, Autistic self-advocate. Amy blogs for a wonderful community blog Ollibean and was profiled on The Thinking Person’s Guide to Autism, Slice of Life Series (click on her name to read) and Paula Durbin-Westby the mastermind behind “International Autism Acceptance Year” also profiled on TPGA’s Slice of Life series offered some suggestions.
As I read their thoughts and opinions and words I felt a surge of anger. Because these are the people the neuromajority should be listening to. Take a moment to imagine. Imagine you were unable to do a number of things without the help of others. Think how you would feel if those people, the very people you depended on spoke to you with undisguised annoyance, or worse, outright contempt. Think about how that would effect you. You didn’t have the choice to walk away. You didn’t have the ability to leave. You had to stay because you needed their help. But their help came with a price. It wasn’t given freely. There was disdain, irritation and often you were spoken to as though you were dirty, damaged or contagious. Or perhaps people were kind, but full of pity and spoke to you as though you were a child. Think how years and years of being treated this way would make you feel? (Obviously this is not every Autistics experience, but sadly it is a great many.)
Now think how you’d feel when the coverage in the news and elsewhere about you, about the things that effected your life, were spoken without a word from people like yourself. Those voices weren’t being heard. Those voices were drowned out by all the other louder voices intent on making decisions about YOUR life and for you. How would you feel? I would be angry and then I would feel depressed and in despair and yes, I just might wish for a cure.
But as the parent of an autistic child, that cure idea has done a great deal of harm. It caused me to lose the ability to logically see things from a practical perspective. As I wrote in my reply to Billy – When Emma was diagnosed I was determined to cure her. I thought that’s what a “good” mother should do. In my determination to cure her, I lost sight of who she was. I thought she was hidden under the “autism” and if I could get rid of it, there she’d be, like a baby chick emerging from its shell. Only that’s not what happened. I couldn’t find a cure. I discovered, when I stopped looking, she was there, waiting for me to see her as she was, as she is. Will she have difficulty in life? Absolutely. Will the world treat her as less than? Yes, sadly so many will. Some speak to her as though she were an animal. I would do anything to have the way people treat her change.
I can’t make people do that, but I can try to make them think about their assumptions. And while I’m doing that I can appreciate Emma for who she is in this moment, exactly as she is.
I don’t have time to write more now. But this conversation, whether I just end up talking to myself, or whether I can get others to join in, I will continue, with the same relentless determination that I once pursued a cure for my daughter.
❤ You are a AWSOME mother! And I hope your thoughts find a way to the greater powers that be to help them open up to the idea that maybe just maybe there are a great many ways to look at "how to help".
Thanks so much Barbara. Wouldn’t that be wonderful?!
You’re right — we all need to hear much more from autistic people, particularly regarding the “cure” issue. What we, as parents, want for our autistic children, and what autistics want for themselves are sometimes alike, but often very different. My hope is that this dialog continues, led by autistics, so we can better learn how you view yourselves, what your hopes and dreams are, and how we neuro-typicals can better facilitate your goals and assist in overcoming the challenges you face every day.
If you are autistic, do you really want to be “cured”? What would a “cure” mean to you? What aspects would you choose to transform? Physical challenges? Language issues? Reading and comprehension? Improving interpersonal communications? What aspects would you want to remain unchanged? If you had to choose between “curing” the problematic issues, and “losing” qualities of yourself you don’t want to change — what choice would you make?
The more voices we hear on this issue, the more we will all be able to navigate these choppy seas and move together toward a common goal we all share — leading happy, fulfilling lives.
Thanks OpenEyes. These are difficult topics with many different opinions, and you’re right the conversation has to be led and IS being led by Autistics. It’s getting the neuromajority to pay attention, that has been harder.
20+ years ago when I started working in the field there was less understanding about Autism in the general public than there is now . It is getting better albeit slowly. Keep fighting the good fight, the world is changing because of all the parents like you.
Thanks Gabrielle and Penelope. Heading over to your blog right now.
yes! keep speaking it, keep speaking it! it will get through, it did for you, it did for me, it needs to be heard so badly.
Aww… thanks Outrunning. I loved your last two posts, by the way. You and Charlie are both progressing so nicely! (This is a joke my husband and I share. It’s no longer just about Emma’s progress…)
I admire your tenacity. I mean, you have a question and you go searching for an answer. You don’t wait for anything to be handed to you – you go get it. That is a wonderful quality and you are a wonderful advocate (and a “good” mother) for Emma and for autism. With your energy, your strength, your passion and your compassion you are making a difference. Every positive contribution you put into the world is a difference and I am grateful for your strong voice.
Life – thanks so much for your ongoing support!
With regards to the “cure” issue when I had not yet come to terms with my autism it was something I thought I wanted too. When Star Trek The Next Generation was on I felt a kinship to Data and his quest to be more human. Much of what baffled him baffled (and still does baffle me). I thought overcoming my autism would be much like him outgrowing his programming.
When I became more active on the net (initially mainly on IRC) I found that my insiders perspective of autism actually did have value to some parents who were willing to listen. I found others of my kind as well. I did some writing on a site that is now defunct and heard from people all over the world that is had been useful and slowly I came to terms with my autsm. That it could actually be of benefit to people was a new idea but one I needed. I like to be useful and altering the perspectives of a portion of people about what it means to be autistic seemed useful for both their parents and those viewed as the next generation of autism.
I came to realize that since autism is pervasive technically there is no non-autistic me. More than pretty well any condition autism shapes pretty well everything about how you experience the world which shapes you and your world view.
I don’t believe in cure. I certainly am not anti treatment. That I can speak at all has certainly been a help to leading the life I live now. I hated speech therapy back when I had it but without it I would have even a slimmer chance of passing for normal those times that it is desirable than I do now.I suspect I have little chance as it is. I “came out” to my rabbi relatively early in our relationship and he just laughed and asked if I thought that would be news to him. I kind of thought it might be as up to then he had mainly seen me in a fairly structured environment. He was kind about it but it made me wonder if I was deluding myself about ever passing.
There are times I still wish I had the options open to the neurologically typical for some things. It’s not quite the same thing as wishing for a cure though but the occasional twinge of envy for people who can undergo stress and still be verbal, or actually stay in a noisy Emergency Room for long enough to get treated doesn’t seem likely to completely fade.
“I came to realize that since autism is pervasive technically there is no non-autistic me.” Yes! Pervasive, I think of that often in terms of Emma. Her gut, her teeth, her muscle tone, her sensory issues, sleep, language, memory, literalness and wonderfully goofy and contagious sense of humor, it’s certainly pervasive.
Thanks so much for sharing all of this. I think it’s incredibly helpful.
p.s. Love the image of Emma in this post. It reminded me of Bob Dylan’s Highway 61 Revisited album cover. IN A GOOD WAY as she is much prettier! I like the mood, the attitude that’s captured.
Ah yes, I remember that album cover well. We are sooo dating ourselves, Charlotte!
Is there anything that a person can do about a nine year old boy who is Autistic and the parents pretend nothing is wrong? It is extra hard when all there friends talk to each other about it but no one talks to them. I know they have great ins so there is no problem there.
He is hardly speaking shows his age with his fingers. He hits his head with various things. He will say yes or no if he really knows you. climbs under the table at fine dining and likes to eat there. He has never been to school….. Oh we live on a island so I don’t know if it is Kapu in english it means forbidden. They are halie ( white) so it seems like they would talk but with so many people from all over the world. Phopaus are the order of the day. Hawaii is very hard to pin things down. If anyone has a clue about what to do please let me know. Ariane I see your mini me in Emma. Lucky girl.
Hi Tami, I’m going to send this comment to an Autist I know who actually happens to live in Hawaii. I’ll let you know what he says. And if anyone else has any thoughts, do chime in.
Here’s the response I received, he lives on the main island and has a support group, I’m adding the link below his comment.
“It really sounds like she wants to gently confront the family about getting a diagnosis and possibly therapy for their nine year old son. They are home schooling this child and probably not getting him the help that he needs.”
This is the link to the support group he began on Hawaii (though he says it’s not very active – http://www.facebook.com/groups/243739612315295/
Hope this helps.
First off…..my Erin would be totally jealous of that cupcake shirt Emma is sportin’! She would love it!!! :O) That said, I think that hearing from other autists and getting this awareness generated is such an awesome thing! I will be honest, when Brett was little and first diagnosed, it was very hard to see older severly autistic people because there were so many unknowns and mysteries we were facing with this tiny toddler. I had to deal with the present and looking forward toward his future was something that was daunting back then. As Brett has grown and his personality emerges, I seek meeting and talking to autists who can give me such insight on being autistic and what that means for them. To see how brilliant and wonderful these individuals are gives me such hope to now eagerly look forward to Brett’s future and all the ways he will continue to grow. As Gareeth states though, I am not anti treatment. There are aspects of Brett’s autism that I feel he needs help with…..he has been very anxious lately and that is getting in the way some times of him doing things I KNOW he really enjoys or things I know he would enjoy if he could just get past the fear….it sometimes paralyzes him and I think no one should live in that much fear. I also continue to find ways to help him communicate because life would just be so much easier for him….that doesn’t mean I struggle every day until he physically says the words. I dream of him just being able to type it out or write it out..however it comes…just so that some day it does. I would be lying if I said I never wanted to know what thoughts were inside of Brett’s head….It’s a part of him I can’t wait to get to know even more! Now if someone offered me a surgery and said we will put this brain in your son and he will be “normal”…..I would pass. In the early years, I may not have. I see now that Brett is Brett and HE is who I love dearly. To greatly alter that would mean he wasn’t him…..I will always strive to help him feel comfortable and help him in the areas he really struggles with but would not want him to be someone else…..I hope something out of this ramble makes sense. To cure or not to cure is a very hot topic….we are all aware of that. I agree that the cure could mean so many things to so many people. I appreciate the thought provoking essay here Ariane as your blog always inspires me to grow!! Blessings~
I always love reading your comments, Becky. I realized that some might read this post and think I was advocating a hands off approach. I know you don’t think that as you’ve been following Emma’s journey for awhile now, but others who are new to this blog, might assume otherwise. And yes, I am in total agreement with you, treatment, finding the right supports for Emma to learn, to live without some of the things that cause her pain are things I continue to look for and do to help her. Right now, she takes magnesium, cod liver oil and probiotics to help her GI issues. We offer her new foods and encourage her to continue to expand on her limited diet. Everyday we work with her on speech, literacy, math and life skills, such as self care as well as helping around the house. It often takes much longer to do a load of laundry than it would were I just doing it on my own, but it’s good for her to help sort the clothing by color and separate out the delicates. She loves loading the clothing into the washer, pouring the detergent in and fabric softener and turning the dial. This morning she attempted to wash her blanket all on her own!
Brett is adorable, by the way! Both your children are. So glad I got to see photos of them, finally!!
Awwww….thanks sweetie! Same for your cutie pies! Brett helped me out in the laundry room one day! Dumped an entire economy bottle of liquid laundry soap on my brand new dryer!!!!!!!!!!!!! :O) UGH! Needless to say, I was without for a while and had to learn how to use the laundrymat again! Thankfully, the warranty covered it!! Love that little stinker!!! :O)
Oh dear, that’s not good!
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I’ve been asking myself the same question. Sometimes I feel like what I see as “common sense” of good parenting flies in the face of convention because I am a parent who also has to decide “what to do” in my child’s best interest.
I am grateful that my child is genuinely happy with himself, he does not internalize judgments we adults have grown to equate with ourselves and others (hence, becoming screwed up in the process.) Whether or not he “knows” he’s different doesn’t seem to factor into his ability to enjoy his life and his experience of life. And this joy and happiness is what I wish to preserve for him as we grow together, it is one of the most important things I can do as his mother, next to my role in facilitating his self-reliance & independence.
I can’t offer the perspective of an adult autistic, but at least I can offer my child the perspective of having a “differently wired brain” and the gifts/burdens this brings. I absolutely believe my child and many of our children can — and have the means — to lead empowered lives rich with friendships and emotional experiences. Those who assume our children lack an emotional landscape have a very limited view of what emotions are.