Tuesday, December 20, 2005

It's Not Like You Think

It's not like you think. Autism, that is. And that's what I want people to know.

I have been thinking lately about disclosure. How open should I be about Oliver? At what point do I tell people that my son has autism? What do I want people to know about life with Oliver? What goal do I have in mind when I share this important fact of our life with people?

Shortly after we were given the diagnosis in early August of this year, I took Oliver to his pediatrician's office for his 3-year check-up. In the examination room a nurse sat down with us, Oliver's file in front of her, and asked if there was anything specific that we wanted to talk to the doctor about.

"Well, Oliver was just a few weeks ago diagnosed with autism and so I guess I have some questions about that."

I remember that my face turned red because I still wasn't used to saying these things out loud.

No reaction from the nurse but she made a note on the file and then, without looking up, started reading questions to me from the standard child development checklist. Does he do this. Does he do that. Can he do X, Y, and Z. As the questioning proceeded I squared my shoulders, straightened my back, firmed my jaw a bit more and willed myself not to cry. I looked directly at her and answered "no" every time. I couldn't believe she was putting me through this drill. After I had answered all but one question negatively I could see that the nurse's face had grown alarmed. She flipped through some pages in the file until she found the check-list presented at Oliver's two-year appointment.

"But he was right on track last year at this time."

"I told you, he has Autism. He started to lose all those skills around the age of two. In retrospect I think he started regressing around 18 months."

The nurse left, looking shocked, and the doctor came in, pronounced Oliver fit as a fiddle and looked blankly at me when I questioned him about autism as an autoimmune disease and about the root of Oliver's GI problems. I felt completely adrift -- and slightly assaulted -- as I dressed Oliver and gathered our things to go.

When I approached the business desk to get my receipt all of the nurses and receptionists were noticeably quiet. No one looked at us and I felt as though I were intruding on a private conversation. The nurse who had been with us earlier was standing to one side looking at her feet. "Oh," I thought. "She told them all and now they feel sorry for me." My guess was confirmed when the receptionist looked up at me with the unmistakeable look of pity on her face. I squared my shoulders once again, looked into my son's beautiful face, looked back at the woman and thought: "I will NOT accept your pity."

I took my son, whom they knew nothing about except for that goddamn awful word 'Autism', and left.

The shame and hurt and fury that I felt that day -- and everytime someone refuses to look me in the eye because they feel embarrassment or pity for me -- has stayed with me. It is burned into my psyche.

But the truth is that I was very fragile at that point. The diagnosis was still so new. And I, like so many people, knew of autism mostly from what I had picked up in the media over the years -- and that picture is, indeed, scary. But what I was having trouble sorting out, even in those early stages of grief, was that the picture that the media gives us about Autism has very little to do with our Oliver.

If the people who look at me with pity -- or who can't look at me at all -- knew Oliver, they would know why I count myself so lucky in life.

I haven't gone around telling people about Oliver. People who know us well know that Oliver has autism. But I hardly ever talk about it with anyone other than Nik, Oliver's teachers and therapists. And then of course, there is this blog, which is a very public chronicle of our lives with Oliver and the subject of autism. The more I learn about autism and the more I live and grow with Oliver, the greater my urge to educate people. I am so proud of our boy and I find myself telling more and more people. "My son has autism."

And it's not like they think. It's not like I thought.

My son Oliver has autism. And I wouldn't trade him for anything.

9 comments:

  1. I'm so sorry about your doctor visit. I was there about 9 months ago. It's weird that 1 out of 166 children have Autism, but the medical communtiy still acts stunned, almost in disbelief. I always get.."He's Autistic? But he interacts and is social?" from some of Gabe's "specialists" (ie ENT, Gastro Dr.)What do they expect to see? Rain Man? Tom Cruise is not right around the corner in their office! Come on!!!Keep pushing forward, and doing the great job that you are.

    Take Care,
    Kristin

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  2. I can really relate to this. I have not told many people about autism. And it's not that I'm ashamed, but that I don't feel like it's their business and I don't want Daniel to be treated differently. Maybe it's a process that I must go through and with time I'll feel more comfortable. I'm so sorry about the Doctor's visit. My pediatrician's office sounds a lot like that, and I'm thinking of switching to another Dr in the new year.

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  3. We had exactly the same experience with doctors and nurses and more. And we feel exactly the same.

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  4. We've had similar problems. Autism is a real stumbling block for the medical profession and this is where you see real ignorance in the profession. I've had Alexander's pediatrician tell me his GI problems were caused by Autism! No referral, no help. A member of his staff told his preschool that he had autism and as a result, Alexander was expelled before he even started!!! Now I don't tell anyone outside of family because you never know what ignorance is going to result from disclosure.

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  5. By the way, I want to add two things. First, Alexander is enrolled in a prozac clinical trial and he is making giant leaps in temperament and language acquisition. Second, I am beginning to believe that I suffer from mild autism as well. I took the Autism Quotient Exam from Cambridge University and scored very high so I've been thinking of having my self officially tested by a psychologist. Ironically, I sort of hope that I receive a diagnosis of HFA. I believe this will make me a much more credable advocate for my son when dealing with doctors.

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  6. Darlin', you won't get any pitying looks from this way. First and foremost, if you don't know how already, learn how to speak up and fight, fight those bastards like hell. My middle grandson is autistic. They told us he would never be toilet trained and that he would never be verbal. We had one therapist that seemed to feel it was just fine if he spent hours in a dark closet if that was what he wanted to do. She went out the door REAL quick and lucky for her it wasn't with my foot up her ass!!

    He is five now. He is completely toilet trained. He is verbal, mostly repetitive, but some completely spontaneous. If you don't agree with something they tell you about your child, remember one simple thing, IT IS YOUR CHILD!! You know that precious angel better than anyone else.

    If you ever need to talk, I will be here. We are in the middle of a battle with the school district at this point, so I'm right out there flexing my most important muscles: my brain and my mouth - LOL

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  7. Christine,

    I am so sorry to hear about that doctor's visit. Those "oh poor you" looks are sometimes just more than a person can (or should have to) bear.

    With my own Sweet M., her first pediatrician said that there was nothing wrong with her . . . that lots of kids talk late . . . and that we shouldn't worry about it. I'm so glad we didn't listen to her or M. might still not be talking.

    There are so many awful responses from the medical community. Among them:

    * so sad, so hopeless (wrong, of course)

    * nothing's wrong . . .s/he'll grow out of it (also wrong in most cases)

    * you must be indulgent or neglectful or uninformed parents

    My personal favorite in this last category is what our first pediatrician said to me after M. had a meltdown in her office: "I can tell you about some parenting classes you can take . . .".

    If I knew then what I know now I would have told her that she oughta find a class in developmental pediatrics. [Sigh.]

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  8. I second what Debby said.

    When your son is in the school system, you will find that they don't want to give your son services. They won't unless you stand up for him.

    Know this:

    1) You HAVE to disclose, because the word Autism gives your child services that otherwise you will never get for him.

    2) School administrators and doctors are mostly idiots when it comes to knowing anything about autism. Teachers are not far behind, but you will find good ones, so don't go in assuming they are the culprit. 999 times out of 1000 it's the administration (if it's a school issue).

    3) As for doctors, if you don't like yours, find a new one. You're the boss there.

    That we have to find everything out for ourselves is a PITA. But the autism blogger community is a really good, informative bunch. You'll find out a lot hanging out here! I also suggest joining mailing lists and Yahoo groups.

    You're the boss of everything. You need to get hold of that Spine of yours, and learn to grow a thick skin. Your son needs you to do that. ;)

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  9. Anonymous8:41 PM

    Hi Christine,

    I just stumbled onto your blog, while looking for your email yesterday. I was very intrigued by your very first two, 2005 entries. Some of those quotes stand out so much, "I will not accept your pity." I have felt this many times. It is all so inspiring! My sister is diagnosed with Asperger's and is doing well. It's all been a challenge but we love her very much. You are his best advocate, keep doing what you do!

    Lee

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