When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve. I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t. Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out. Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant? Or so my thinking went. During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect. I found none and concluded that since I couldn’t find any, there must not actually BE any to find.
Still, just on the off-chance I was somehow wrong, I kept looking. Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life. (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years. Despite all of this, my search continued.
In 2005 Em’s PDD-NOS diagnosis officially became “autism”. As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant. I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good. I bought into the autism is like cancer idea, and therapy was chemo. (This idea was very popular back in 2004, though I hope it has waned.) It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is. The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.
Now fast forward to this morning. This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”. Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em. Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.” It is a wonderfully written description about a baffling behavior. She does such a terrific job describing her actions and words that they made total sense to me. Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.
And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me. It’s not because I think to myself, oh Emma is going to become this person when she’s an adult. I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future. I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children. How could I? There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child. It’s kind of a ridiculous idea when you stop to think about it. And yet, that’s what I wanted for all those years when I was searching. I wanted to find someone who seemed just like Emma was. I wanted this desperately because I was so fearful of her future. Yet, all those autistic adults who are not exactly like my daughter are the very reason I am no longer fearful and why I have so much hope.
Blogs, both the writing of this one and finding those written by Autistics have changed my life. Blogs are a slice of life, immediate and interactive. I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer. I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond. The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book. Books are wonderful too, but they’re different. They do not have the interactive element to them that makes blogging so wonderful. Blogging is very much about “us”. We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”. Another aspect of blogging is – anyone can blog. You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write. So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.
To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you! You are making a difference. You have changed my life. How does “thank you” even cover the enormity of that? It doesn’t.
Emma – 2003
you do write beautiful posts 🙂 thank you for sharing
if i was going to make a medical analogy for zack’s autism…. It would be diabetes. With the correct diet, therapy and medication (for us it is probiotics and multivits) the problems are managed…. But the underlying condition is there for life.
I do struggle to convince people that zack has not ‘recovered’ from autism. He continues to make remarkable progress, but what they don’t always realise that much of it is related to the impact of the diet restrictions (no food colouring mostly, cuts out a lot of junk food items and many drinks) and regular OT sessions and OT home programme.
Carol, it’s always wonderful to hear about kids (and their parents) who are flourishing! So glad all is going well.
Carol I think this is a very intriguing analogy you made, using “diabetes” instead of the ubiquitous and dreadful “cancer” analogy.
I have tried to make a similar point in other arenas about the fact that yes, some people on the spectrum suffer a great deal of havoc in their lives, but that those issues can be addressed for what they are instead of trying to convince yourself that you can “remove the autism” from a person all-together. I think sensory issues can be addressed and “managed,” as you say, for what they are, gastrointestinal issues (Celiac and such) and food sensitivities can be identified and managed for what they are, motor-planning issues such as Apraxia and Dyspraxia can be diagnosed, obsessive-compulsive tendencies can be recognized and taken into account in regards to behavior patterns and inflexibility/rigidness of thinking… etc, etc. And because all Autistics are in different places on the spectrum, the occurrence of such a myriad of issues to deal with varies greatly from person to person, as does the “success” in managing, or possibly even, eradicating some of them. But, much to my dismay, I got LAMBASTED for this sentiment 😦
I don’t know how to get across to people that Autism is a permanent, neurological, lifelong state, that cannot be “removed” or “cured”, and that THAT is ok! That doesn’t mean it doesn’t severely suck for some people, I knwo it does. And it doesn’t mean that I fault *anyone* for trying to address the problems that cause their children the most distress. I just tend to view all of this through glasses I think akin to Carol above. I will accept that my child is Autistic, and that he is wired differently from many people, and that he has sensitivities and motor planning issues and speech impediments and a host off issues that I will do my damnedest to adapt to and help him manage, But I will never “cure” him of Autism as a whole… and that is ok.
Ariane, I think part of what I love so much about your posts is that your Emma reminds me VERY much of my Lucas, and your discovery and love of blogs by Autistic adults is very much a mirror of my own. And I love that, in general, people can comment on your posts and often disagree, but that everyone seems able to remember that we are all in the same boat here, and can be respectful and encouraging to each other, even when we disagree 🙂
Thank you so much Katrina. It’s funny what people disagree with (or at least it is to me). This post has already gotten a number of people asking things like – but what about neurotypical voices and their perspective? I am often surprised by some of the responses I get, but I do think the more important piece with all of this is something Chou Chou said below. The importance of bridging the gaps we have with one another and the only way we can hope to do that is by listening to each other. I’m really glad you feel this blog is a place people can respectfully disagree, I do too!
Really appreciate your comment!
Oh, Darling, you are always so encouraging, like this great cheerleader for all the autistic friends who have grown to love you:). I love the blogs you have introduced me to, and am SO excited about the advice Ibby is giving on tinygracenotes.
As I have mentioned, I am in the middle of our busiest time of year, and my life is a series of performing, recovery, and prepping for the next one. If I don’t give my all, I am not doing my job. I shut down, big time, in between, and so, have not been able to offer what is mine to offer as a friend and mentor. Oy!
We have a new website about to be published, a self hosted WordPress. I just have to learn how to run it ( more Oy). On it will be not only a band blog, but a blog for autistic musings, which will connect to you and all the other great bloggers. This will be viewable to anyone who visits the band’s website. I can’t wait! Thanks for the encouragement. I tend to assume my small voice is unimportant, but you have let me know that may not be the case. Lucian Perkins documentary about Doc and me has been delayed while he covered the elections, and filmed in Cambodia, but he is anxious to get back to it. I am no longer able to hide behind my happy singing, but it is a lifetime habit. Connecting other ways IS hard! It always will be! Thank you for making it easier, and I will continue to try, just as you try to understand your beautiful Emma. Keep asking, “Why”! You’re the best! 💕
Dearest Chou Chou, do NOT feel pressured to hurry with your blog, you have so much you are doing! (Though it sounds wonderful and I can’t wait to read it!!) You make so many so happy with your performing AND you do so much by commenting!
Do keep me posted about the documentary, very exciting.
Sending you lots of love!
I’ve toyed with the idea of writing a blog. I’ve always enjoyed writing, and found it to be quite therapuetic. The only thing that holds me back is that I’m trying to prioritize and spend more time on exercise, cleaning, homework, and projects around the house, and “less” time in front of the computer. 😉
You write wonderfully, Ariane. If you’d never started writing this blog, if I’d never started reading it, my outlook would be very different than it is. I’ll always have you to thank for that, and for being someone that let me reach out to them during a very difficult time in my life. To quote you, “how does “thank you” even cover the enormity of that?”
Oh, and guess what? I met an amazing mom yesterday at Risa’s therapy. She has two girls, twins, who are ten years old and both autistic. They are fraternal twins, and look nothing alike. Sabrina is dark haired and darked eyed, and a pretty big girl. She is pretty much completely non-verbal, like Risa, and reminds me of her in many ways. Her sister’s name is Emma, and she is totally different. A tiny little blond haired, blue eyed little thing. She talks, but just in echolalia and scripting. She can sing thousands of songs word for word, but can’t have a conversation with you.
Their mom, Karen, is about my age. She’s a single mom, works as a waitress part time, and gets very little help from their dad. We struck up a conversation and talked the entire time our kids were there, and exchanged numbers and are planning on getting together. I’m VERY excited for me and Risa both to have found some new friends! 🙂
Anyhow, keep up the good work. You have no idea the impact you’re making on the world!!
You know as I was writing this, I didn’t think to add appreciation to all the people who comment, but those people are as important as those who are blogging, without anyone reading and commenting there would be little to discuss, unless you like talking to yourself! The other thing is (as you know) you feed me an almost endless supply of new topics to discuss! I love reading your comments and always get something from them.
This is such great news about meeting new friends. How wonderful! I’m really happy, Angie. Also, I love getting your updates and hearing how things are going. Makes me happier than I can say. XX
Thank you for writing, many parents blog have too many triggers so I struggle to be able to read the perspective of a parent, you are one of the few I can read and love reading.
I completely agree with what you say about blogging.
Aww.. that is so nice of you to tell me. Thank you. For any of you who do not know the blog Diversity is Art – here’s the link – http://diversityisart.wordpress.com
Oh yes. I also believed that PDD-NOS would be a temporary condition! I thought that Early Intervention was the golden ticket and that Olivia would be having regular conversations with me before she was 3. She is 4 now and can speak but only short sentences and I have no idea how much she really understands. The toughest thing is when she is upset and I can’t understand what the cause could be.
Anyway, I know better now and accept my amazing daughter for who she is and am so proud of her accomplishments thus far. (she is playing harmonica right now!) It still scares me sometimes to think about her future but my husband and I will keep listening and help her however we can. It has been amazing reading all of the different blogs that you have suggested Arianne. Thank you!
Kristen, it’s always such a relief when someone tells me they reacted the same way!
You know what helps me (and it’s something an Autistic friend reminded me of) whenever I feel fearful of Em’s future I think back to when I was her age. I try to remember, what was I like, what was I interested in, what was going on for me then, could I have imagined that child as the me today? I couldn’t, no one could.
I just love that Olivia is playing the harmonica!
I had a single entry in a blog once. A blog would probably work better to keep me plugging away at tackling issues in writing but somehow it doesn’t happen. When I was young I wanted to be an author. As I grew older despite the encouragement of the Canadian Author’s Association (who reviewed me work and declared it a crime if I didn’t publish) I came to realize it would be very hard to write fiction. I still want to but there are so many areas of human life that are a complete puzzle to me that the only way I could do it was from the perspective of a person like myself which might leave everyone else seeming a bit one dimensional.
My brother is still hung up on the notion due to early success that somehow a book would solve all my problems.
Well, as I wrote in reply to Angie’s comment, I should have expressed appreciation for all who comment because I’ve learned from you too. The bigger point is less about the way in which you speak out and more that you do. I think of you as someone who is most definitely speaking out, Gareeth and I get a tremendous amount of insight and hope from your comments as well as just enjoyment in getting to know you!
I feel the same way that you do about blogging for me it’s an opportunity to show people what the life of a person with special needs is like people see a wheelchair, walker or crutches and think that’s all there is to a person i want to inspire them to look behind all of that.
Nisha, thank you for stopping by here. For all who may not be familiar with Nisha’s blog here’s the link – http://nisha360.com
Heh. I remember our PDD-NOS diagnosis and the shock I felt when I read the statistics of PDD-NOS remitting. We assumed that T’s differences were to to him being very gifted. I would have swallowed our diagnosis like sweet juice if the media had not frightened us with “autism epidemic” scare tactics.
Yet, I owe them a tremendous debt of gratitude.We would have never embarked on this marvelous journey without them. Our lives are so beautiful now, because of awareness.
You champion the next step: acceptance. I feel personally appreciated each time your mention or share the stories of autistic adults. My little boy and I join Emma and Aspie Writer in hating socks. I smile to think of this odd rallying cry, and I am grateful that your are broadcasting it!
You know when I was growing up, hating socks meant you were called a “hippie” which was considered tres chic in Northern California!
Now I’m beginning to wonder about your father…he HATED socks and would never wear them. Do you remember how he would explain that the men in the French Foreign Legion never wore socks? He wasn’t in the FFL. Ever. What was all that about? And he was very compulsive. Everything had to be arranged just so. I used to think he just did it in order to irritate me, but now I wonder?
I’m reading a very interesting article in this month’s Scientific American about the millions of neurons in the brain whose synapses have to fire simultaneously in order for a person to be able to walk across the kitchen while drinking from a cup of coffee and talk on the cellphone all at the same time. According to the author, it is primarily a timing issue.
How incredible that we so-called neurotypicals ever get anything done at all, not to mention multitasking? And if just a few of those synapses misfire, then there’s something wrong with you, and you must be cured? Really??
I always loved how Pop insisted that because the men in the French Foreign Legion never wore socks, neither would he. (As though he needed that justification!) Yes, he was very compulsive, I didn’t have a chance as I get it from both sides, it turns out. 😉
Did anyone ever break it to him that the French Foreign Legion was actually (like pretty well any army) pretty obsessive about socks? They certainly wore them. They had endless procedures for the ideal way to wear and care for socks even.
I actually just googled – “Do men in the Foreign Legion Wear socks?” and found a whole bunch of stuff about everything BUT socks. There was one reference to the “no socks” in the Foreign Legion and, evidently the Navy SEALS do not wear underwear! Who knew? Who wanted to know? But then I had to go fix dinner and so my search had to end… Gareeth if you have a link about this – send on please!
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If you look through the history of the French foregin legion socks were on their very basic kit list all along. Various training manuals deal with the topic in depth even (as I said like any other army footcare is key) You can find thousands of references to the kit list and various instructions and changes of instructions regarding socks for the French Foreign Legion. So not sure where your Dad got the idea in the first place and the occasional member might have said what the heck I am in the dessert I will wander around barefoot but they were issued sock and policies regarding use of said socks were modified numerous times.I had to teach foot care and field hygiene and occasionally in an attempt to make those topics slightly more interesting we would drag in details from various more exoitic armies to stress how key the health of the feet was. (One of the worst jobs as a staff cadet was foot inspection so for the years other people’s feet were an issue for me I was very devoted to their education about said feet) Toe jam is not pretty.
Oh Gareeth, you are a woman of many, many talents! Toe jam… ew, just ew..
You might be interested in Samantha E. She’s a singer from Scotland who was diagnosed PDD-NOS. http://www.facebook.com/SamEmusic?ref=ts&fref=ts
Having read most of what I know about the FFL pre internet I can’t give you a link to the original kit lists. If you google you will see modern recruits are told to bring a weeks worth of socks though and complaints about the days of them being rationed to two (two is the number I remember as having been part of the basic kit)
I actually found cadets really helpful despite the toe jam. It was the most structured setting I could be in with my age mates and since I did well at it I quickly outranked anyone who might have been inclined to be mean to me. So while toe jam was no fun it did let me experience a lot of things I never would have otherwise like falling off the top of a glacier and living to type about it or the almost unsetting sun of a Yukon summer.
I loved that there was a right way to do pretty much everything and the right words to say in the formal bits were the same for everyone I guess.
Seems to be a bit of truth of sorts to the sock thing. I doubt my son, the ex Navy SEAL, would want me discussing his underwear, or lack thereof, here, though 😀 Gareeth, you’re great! XO!
That was specific to the deserrt though. The FFL fought and trained in many areas. In the dessert sandals without socks were the norm. This is a modern reference but if I get obsessed enough I am sure I can find the actual book that thad the original kit list. http://lib.ru/TXT/franclegion.txt_with-big-pictures.html Googling more extensively there is much discussion of socks and the importance but in the middle of that one there is the expected connection between socks and foot health.
Wonderful post. When I couldn’t understand my daughter’s condition, I turned to reading everything written by people with autism. It helped me tremendously.
Can’t believe I missed this post that day! I remember that day: I was getting ready to come and read because we were chatting and some nimrod had Tweeted to you that this post was like, some-random-how a threat to everyone’s life, so I went and got me a Twitter account in order to snark at that, which derailed me, because, you know, multitasking. So glad I got to read it now! ❤ Except I had a just had a giant giggle fit about the Navy SEALS and no underwear, which startled L. because it is kind of late and she is beside me here trying to do some nursing reports. Actually, it startled me, too. You don't learn these underwear facts on every Autism blog, which is one example of why this one wins. In other news, Socks = Invented by The Devil.
I don’t mind socks, but Em not only doesn’t like socks, she is very particular about her foot wear and only likes wearing crocs (summer) and Uggs (winter). Given a choice, Em would go barefoot!
Sorry it took me so long to get over here and officially say, thank you, for all your kinds words. Your words have encouraged me to continue writing even on the days that I think it is all for nothing, or that no-one in the world would want to read my babbling.
I love the above commenter’s comment: “Socks=Invented by The Devil.” Ha! I agree. LOL I just spent about two hours in Kohl’s the other day with my husband buying socks (because I was down to two pair and it is January). I went through the isles squishing, feeling, rubbing, and putting my hands inside each pair, while hubby waited, not so patiently at times, for me to be through. The results after fondling all the socks in the store: I now have six more pairs that I will wear, and one fuzzy pair for cold nights to sleep in!
Thank *you*. You who are willing to listen to us, to help broadcast our stories, to encourage other parents with your own posts…. This is something equally important.
You are so right about the immediacy of blogs, and how it can be a huge help. And the support from the people who comment.
Thank all of you.
Don’t know how I missed this comment from you! (((Hugs)))
Quick Update: I finally got all my madness together, cleaned up the memoir that I was writing, and it is available on Amazon! Yay! I hope that my experiences can reach more people and help them to understand what goes inside the minds of autistic people–especially when we are children and cannot express or understand what we are thinking and feeling.
Here’s the link if anyone is interested: http://www.amazon.com/Twirling-Streets-Noticed-Undiagnosed-ebook/dp/B00CB4WZT2/ref=sr_1_1?ie=UTF8&qid=1365910301&sr=8-1&keywords=twirling+naked
Yay!! Congratulations! I just bought it and have it downloaded on my iPad. Good for you and so happy. Thanks for sending me the link. I will share!
Thank you so much for your support Ariane!