First there was the evaluation. The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end. Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions. Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern. They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.
Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand. None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism. Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”. Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy. Her bright future no longer bright, she was categorized. Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin. If we were lucky she could be trained. She could be “modified”. She was young, we were reassured. There was still time. We were congratulated for having caught “it” so early. Early intervention was key, we were told. Intervention…
That was the beginning. That was the beginning. Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency. People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought. Some were more successful than others. Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?” and with each, the darkness crept closer, enveloping us in arms of sadness and pity. The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.
What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark impenetrable wall. What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you. You see, they are coming at all of this from the perspective of their own limited neurology. They cannot see beyond what they believe to be true. But there is another “truth” and it is one they are unable to tell. The words they use will only lead you down a path you must reject. It is a path that will descend into more fear, more terror. It will not lead you and your child to anywhere you want to go. Come with me, instead. Walk with me. Walk toward the light.
In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk. It is with them that I surround myself. It is with them that I choose to be among, because they know. They know what it is to be Autistic. They put beauty in the word “autism”. It is their faces, their words that I think of when I think about autism and my fear is vanquished. Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved. A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.
Walk with me… walk toward the light…
Emma's Hope Book 
This article shines brightly and represents all of us moms who witness the beauty and majesty of our children everyday, I’m walking in the light with you!
Thanks Jodi!
Such an accurate portrayal of the diagnosis period. When Nathan was diagnosed at 22 months, I knew what the diagnosis was going to be. I asked for the diagnosis so that he could qualify for some services that he would otherwise not get. After a half hour with the diagnostician she agreed that he had autism and added, “I’d have a little more hope for him if he would imitate”. Even though I am (and was at the time) highly educated (I have my teaching license in both regular and special ed), worked with autistic kids in several settings for over 10 years, I still felt like someone literally kicked me in the stomach. How different it would have been if I would have had an autistic community to support me when we got that diagnosis. And, shame on that diagnostician for making that comment to me and my husband. It just added to the “autism is horrible” mentality. As for my “non imitating” now four and a half year old son, in my opinion he is doing fabulous. He is potty trained (OK, mostly), has communication skills, enjoys being with people, has taken a sudden interest in kids his age, has a sense of humor, love his little sister, and has recently developed a mind of his own (translation: he is now stubborn as the day is long…but good for him for telling us and standing up for what he needs).
The diagnostic process needs to change. Instead of the label of autism being delivered in a negative light, it should be delivered with some sense of happiness and joy. With hope.
I agree Beth. I think/hope that sort of language will soon be thought of as archaic.
((Ariane)) ♥ Yes!! ♥
Oh there you go with those hearts… 😀
Walking in light.
Amen.
🙂
It is so wonderful that you have found a community in which you feel accepted and which you feel embraced. I think that is goal of most people. Just please don’t give up on us so-called NTs. Don’t paint us all with one broad brush and become too segregated. I don’t have autism but I care deeply for those we do, just as I care for a lot of other people who the world tells me are “different” from myself. 🙂
Ah… no! I didn’t mean to imply I am therefore rejecting all who are not autistic… more of a celebration of those who are…
(((Charlotte)))
correction: I care deeply for those ‘who’ do… Quite clearly it is time for some coffee! 🙂
Iced latte? I love iced lattes!!
Our experience was quite different and much more positive. We were actually RELIEVED to finally know why our sons behavior was so different. We could name it, which was our first step to finding some semblance of control. The interventions were a Godsend which enabled us to break through the invisible shield and teach him how to initiate meaningful communication with us. Now he is 29 yrs. and I would not change one hair on his head. Our lives are very good.
Always great to hear about the good stories!
The more I hear others’ diagnosis stories the luckier I feel. My son was diagnosed by a doctor from another country who was fulfilling a work for tuition reimbursement contract. She was friends with my psychiatrist who was working out a similar contract. Both women were not invested in our culture’s ‘fix it’ mindset. They took the tact that an autism diagnosis was simply a piece of information. I was empowered to use that information to make my own decisions, both as a parent and as an autistic person. I had a good year or so before I became aware of the world of intensive intervention; enough time to feel comfortable rejecting that path.
No, I cannot say I felt empowered at all by the diagnosis or any of the advise we received directly following it. I’m always glad to hear of others experiences that were positive!
beautiful az. thank you. i am proud to be your friend. very proud. autism is a prism that can be shared to help free individuals from the prison perspective of their own limited neurology. lightly b
I’m following… lightly b… I’m following…
Exactly.
❤
R.
❤
In regards to Sharon Reed’s comment: Imitation is a good skill, but not at the expense of an individual’s humanity.
In regards to this blog: This is the first time I have read about anybody referring to my autistic friends and me as the light. It is downright weird to think of myself in such a positive way! I am left with a new awe to ponder this day.
You and Ibby and Cynthia and Andrew and Emily and Amy and Barb and Emma and Peyton and Landon and Kassiane and Paula and Renee and Kis and Julia and Bridget and Steve and E. and… so many more… yes, you are all bathed in the light of hope and optimism and love… I thank you for that. You have saved me from descending further into the darkness.
I’m walking (figuratively speaking lol) towards the light with you. I’m so sick of well meaning people being amazed by our “strength” meanwhile we are just living our lives.
I wholeheartedly agree with you and all of your commenters. I am in the process of rewriting our own history and perspective of that “diagnosis day.” I recently wrote a post about our ‘D Day” (because it just passed) and linked to some of your posts. You were one of the many instrumental people who changed my perspective. I am so happy to have found other bloggers who inspire and are changing the mindset of the (once scared, now empowered and hopeful) moms out there! Let HOPE shine! I am definitely walking toward the light!