It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning. It no longer is a word of benign information, but instead is a word of caution and fear. I do not think this is a mistake. I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully. I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.
My awareness of autism has dramatically changed over the years. It has changed because of the information I’ve found and been given. In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism. In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.
As time went on, I became increasingly aware of my own misery. The common misery supposedly shared by us parents, dominated the conversations surrounding autism. I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives. This is where awareness took me. This was what I knew and understood. But this is not the sort of awareness I want to be a part of. This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive. Those first few months after receiving the diagnosis are critical. How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.
Autism did not cause me to be miserable. I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me. Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer. Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers. Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.
If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic. Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child. The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter. Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.
Below is a small list of people I know and am in touch with. I’ve provided a link to their blog, book(s) or film to each of their names. I will feature more people who have helped me in my growing awareness during this month of April. I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate. Want to become aware? Read their words.
Non-Speaking Autistic:
Amy Sequenzia, Barb Rentenbach, Peyton Goddard, Emma, Tracy Thresher, Henry Frost, Tito Mukhopadhyay
Autistic:
Ibby Grace, Gareeth, Kassiane, Paula Durbin-Westby, Landon Bryce, Julia Bascom, E., Renee, Judy Endow, Michael Scott Monje Jr.
Emma's Hope Book 
Yes! That says it all… as I squeeze in a few wonderful readings before work!
(((Leah))) Thank you for reading and for your friendship!
This is one of those times when I have no words… (gulp). Much love and many ((hugs)) from a ‘Teacher’ to a ‘Teacher.’ I am honored to be listed among the very amazing people you mentioned above.
I attached a link to your blog, but am wondering whether you’d prefer a link to your book? What do you think? And by the way, am reading and enjoying!
I’m so glad! You can absolutely link it to my book 😉
Done!
As always, your posts bring me immense amounts of hope, and this one especially. I’m the mother of recently diagnosed twin toddlers and it can be difficult to find resources that don’t push behavior modification, etc. Reading about your journey has been eye opening, thank you!
Jessica, thank you so much for reaching out. I’m really pleased I’ve said some things that have given you hope. That makes me happy! 😀
Fantastic and informative post. Thanks yet again…posting on my page.
Thanks so much!
I love your blog. I can relate on many levels as a parent. I am wondering, would you please post an image in your blog posts so that I may pin them to Pinterest on my “understanding” board? Thanks!!
Hi Angie, up until about a month ago, I used to post an image with every post, but most of the images were of my daughter. As I don’t have explicit permission from my daughter, I decided I couldn’t keep doing that. So I will try to find an image that I can put on the right hand column as a default image, which should then go up on a board when you pin it. Let me see if that will work…
Thanks very much Ariane! I found your pinterest page too and am following so I can pin straight from there!
Angie, I’ve just pinned this post to my Emma’s Hope Book board, you can repin – http://pinterest.com/pin/35254809555462858/
Again, you hit the heart of what many of us are feeling. When I go back in time, I knew that Mackie at about 7 months was different than any other baby I’d ever known. Our pediatrician was sure he was just a little delayed because he’d been premature – and her shock in 2004, when we got the diagnosis, she admitted to me that autism was the last thing she expected to hear. Through the years, we’ve gotten sidetracked from our own instincts (probably we all have), because of so-called experts – one of whom told me that because he couldn’t count in order, he didn’t understand numbers – now he does triple digit multiplication in his head, thanks –
If we trust ourselves and in the idea of not only competence, but brilliance, we’ll be doing a great service to our kids –
If I go back further, to my own childhood – I had teachers who told me or my parents that I was slow or stupid (yes, stupid) because I could not seem to crank out my homework. They never bothered to try to see me, to look at my testing scores – and it wasn’t until some people had faith in me (and I started running) that I realized they were all wrong. I can’t let that much time be wasted for Mackie – I too wish I had heard some of the things I am hearing here and now…back when he was five or six. We’ll get there…I know it.
I just wish someone had explained to me what it means to “presume competence” and gave me a list of blogs written by Autistics to read, that would have saved me SO much anxiety, worry and pain, not to mention money on all those “remedies” we tried.
But since we didn’t, I am determined to get the word out to as many as I can so they don’t have to make the same mistakes we did.
I love this post. I had my own version of an Autism Awareness post that tried to put to light what Autism speaks stands for (which I knew would be controversial) and I was astounded at the comments of parents (of neurotypical children). No one, really, could understand how you couldn’t love the child without hating the Autism.
So, please keep doing what you are doing. I do not have the writing skills or abilities to keep this message in the forefront of everyone’s minds. It is such an important thing for parents of children with autism to know and understand and embrace. And, I, like yourself, learned that from my relationships growing up with people that grew up with the disorder.
You’re awesome!
I think it’s a really hard concept for a lot of people to understand. I know it was for me. I just didn’t “get it” for a great many years. I thought that meant I was “giving up” on my daughter and not doing anything to help her, but that couldn’t be further from the truth!
I realize that I misspoke in my above comment. What I meant to say is that you can’t love a child with autism and hate autism. 🙂
I agree with you, loving your children can’t be conditional. And I think that it is conditional if you don’t embrace who they are with a whole heart. It’s not “giving up”, it’s simply loving who they are whomever that may be. I think you are so evolved and a wonderful TRUE voice for children with autism. 🙂
(((Amber)))
PS I knew what you meant! 🙂
When you put it like that “Autism Awareness” does sound scary I think we should change “Autism Awareness” to “Autism Education”. What do you think?
I don’t know… all these words… none of them can really sum up the intent behind them. I mean awareness isn’t a bad thing, necessarily. It’s just awareness about what exactly? You know? It so depends on the person speaking. It’s the same with education. We can “educate” the public with lots of scary numbers and statistics or we can educate them about something else, but if the underlying belief is that the child is fundamentally not okay and has a disease that we need to find a cure for, then all the education in the world will not do much good.
What I love about the whole presumption of competence is that it takes all the judgment out of it. It’s all about presuming that your child CAN learn IF they are given the necessary accommodations and tools to do so.
Thanks for including those links. My son is non-speaking and just beginning use of AAC, so I really want to read more from that group of autistic adults.
If you haven’t watched Wretches and Jabberers, you must. It is such a great documentary. Also the Institute for Communication and Inclusion has some terrific video clips on their site that you can watch as well as lots of great resources. http://soe.syr.edu/centers_institutes/institute_communication_inclusion/About_the_ICI/Videos.aspx
My name is Emma too, and I am Autistic. I am diagnosed as having Asperger’s Syndrome. My daughter has High Functioning Autism, and my son is going through the assessment process now. I have just discovered this blog, and I would like to keep following. I look forward to being able to contribute in some way, as someone living with autism internally and externally!
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