Loss of Diagnosis Day

May 24, 2016

julieI didn’t want to keep the appointment. The day before when they called to confirm, I regretted not telling them I wouldn’t be able to make it after all.

It was going to be such a pain, I reasoned. Seventeen pages of medical history to still fill out. Had to make copies of over a decade of IEPs. Had to go find old phone numbers. Test results. Clinical reports. Ugh. Why did I do this?

Oh, yeah.

I made the appointment under duress back in February. I was halfway through writing my memoir  — An Unfortunate Coincidence: A Mother’s Life inside the Autism Controversy due out this fall from Skyhorse Publishing — when anxiety and panic took me over in a way I hadn’t anticipated.

Reliving the trauma of our regressive autism sent me spiraling. I felt infuriated, heartbroken, embarrassed, and many other emotions all at once. I began envisioning being attacked for every choice I made by readers. I started to wonder why I had ever thought putting my life out there for people to pick apart was a good idea.

Oh, yeah.

Because it’s an important story to tell. Our autism experience is a part of history that needs to be documented and told by those who lived it, not those who want to rewrite it to fit their narrative.

Anyway . . .

For several days that month, guilt was the dominating emotion. It had been years since we had seen a neuropsychologist (like, ten). It had been years since we last saw our MAPS doctor or did anything biomedical. Although our daughter was an immediate and profound responder to biomedical treatment back in 2005, she plateaued several years in.

By age eleven, we had taken a full break. Writing the book, I worried that was a mistake. Perhaps it was no coincidence she developed scoliosis when we stopped. Perhaps it was no coincidence her reading ability hadn’t improved. Perhaps this was my fault . . . again.

julie and daughter

Julie and her daughter

And so I made the appointments: MAPS doctor. Family physician. Dermatologist. Neuropsychologist. It was time for a new full work-up. This was the last appointment.

In the meantime, I recovered from my anxiety. I think writing is a healing process meant to emancipate us from our suffering. It is for me at least. Once the book was done, so was my guilt. I’m fine now.

But the appointment still stood. And even though for years I haven’t cared whether she officially qualifies as having an autism spectrum diagnosis or not . . . and have believed since 2006, she hasn’t . . . I never went through the trouble of making it official.

To me, it didn’t matter. I had left her categorized as Other Health Impaired anyway. Autism is a medical disorder, not a mental difference, I believe. And it didn’t affect the services she needed and received to leave her OHI. Plus, even at the end of eighth grade, when a new special education director first met us, she was stunned we ever had a diagnosis to begin with. The same thing happened at this year’s IEP for high school.

Autism? Really?

So this morning was really just a formality. Preparation for the next three years of high school, making sure she’s being challenged, seeing what effect puberty is having, and putting together a plan to transition to adulthood — which is technically only three years away. Lord, help us.

I got up early and filled out the seventeen pages. As I did, I wondered what would be in store for me as the doctor read our medical history: Encephalopathy. Heavy metal toxicity. Chronic ear and bronchial infections. Eczema. Rashes. Constipation. EEGs. Low tone. Mitochondrial problems.

Would I get the one-eyed look? The raised eyebrow from the doctor with an “autism-is-genetic-you-poor-mom-who-needs-to-blame-someone-or-something”attitude, or would it be the polite but condescending head nod with a weak half smile “well-that’s-so-nice-you-tried-other-things-and-think-you-saw-improvement-but-it’s-not-really-what-happened” look?

I’m used to those looks. I’m prepared for those looks. I’ve spent a decade navigating my way around them. I was prepared for them this morning.

I was not prepared for what happened.

AutismOneI walked in and signed my name to let them know we were there. Immediately to the right of the clipboard was a flyer for AutismOne. I raised my own brows, stunned and then suspicious. I even looked around to see if I were being punked. Certain I was not, I took a picture in astonishment. This was a good sign.

The assistant then took our paperwork and shared it with the doctor. After fifteen minutes she apologized for the wait, letting me know that the doctor was reviewing my information in detail. This could be good or bad, I figured at first. Good, I then decided it had to be. The flyer said so.

We entered the office where we would spend the next two hours going over everything and having my daughter assessed. I had given quite a bit of history to the doctor in the information I provided, and not five minutes into the appointment she noted my daughter’s regression at 18 months. She asked me what happened.

“Well, she had a high-pitched screaming fit, arched her back, and then we noticed within a few weeks, she was gone. She stopped responding to her name, speaking, or showing any interest in anyone.”

“Any vaccines right around then?” she asked. I raised my brows slightly again. Was this a trap? I mentioned nothing about vaccines anywhere.

“Why yes, eight in fact, while on her tenth round of antibiotics.”

“Uh-huh. Chronic ear infections I see? Bronchial ones too? Lots of Tylenol I can assume?”

“Why yes . . . lots.”

She sighed. Loudly.

“You know, the brain has its own immune system. We just learned that last year.”

“I know!” I replied enthusiastically. “University of Virginia research, I think.”

“You know more than most parents. Impressive. So you get it, I imagine. You understand what we’re dealing with? Neuroinflammation? Immune system problems? Any time a brain is impacted that early in infancy we have problems . . . but don’t lose hope, there’s so much we can do now.”

We spent the rest of the time going over my daughter’s academic, social, and cognitive processing problems. At the end of our appointment, just reviewing her results and observations, certain nothing else could shock me, she took my breath away once more.

“For what it’s worth, your daughter does not qualify as having an autism spectrum disorder anymore, Mrs. Obradovic. This isn’t Kanner’s autism or Asperger’s. She’s got some residual symptoms, yes, but that’s no longer what’s really going on here.”

I agreed, acknowledging that was accurate and not thinking much of it. We made our way to the front, scheduled our next appointment for some follow-up testing regarding processing problems, and said our good-byes.

After I dropped my daughter back at school, I called my husband to share the good news. To me, at first, the good news was simply that I had found a doctor I felt comfortable with. But as I repeated what she had told me at the end, my husband made it clear that was in fact not the best news.

“Wow, that’s amazing, Julie. You realize that, right? You did it. It’s official. She no longer has autism.”

I let his words only sort of wash over me as we discussed the serious issues we still have to deal with. Make no mistake: life is not all unicorns and rainbows. We have vulnerability issues, academic concerns, processing problems, and social deficits that all still need our attention. We are not completely out of the woods.

But for a moment, I realized once we got off the phone and I sat alone in the car before going inside, we had taken one gigantic step towards the open field. It was no longer just my word against others. It was no longer just my assessment as her mom. It was a licensed clinical neuropsychologist with over thirty years experience who just’d confirmed it.

We lost the diagnosis.

~ Julie Obradovic

Julie Obradovic is a Contributing Editor to Age of autism, a guest blogger for Thinking Moms’ Revolution, and the author of An Unfortunate Coincidence: A Mother’s Life inside the Autism Controversy by Skyhorse Publishing due this fall. She begins hosting a monthly podcast for Generation Rescue in June.

For more by Julie Obradovic, click here.

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22 Responses to Loss of Diagnosis Day

  1. Carolyn McD says:

    We want your dr! I want the dr who doesn’t give me “the look”. If it’s in SF area, please email me . Isn’t it sad that we don’t want to publicly out your dr in case she gets nailed for being so wise?
    Congrats on your amazing joy and achievement and journey!

  2. Carlyn says:

    We are SOO Close! I have survivor’s guilt as he has done so well and yet we struggle. we have a foot in both worlds. He is mainstreamed but barely passed his first year of mainstream. I just don’t know what to do next. Ideas? Help?

  3. Deb says:

    11 yrs on this merry go round. She is much better, but need new docs. May I have the name of your doctor? Thank you. [email protected]

  4. Jess Pace says:

    So incredible! Made me cry! So happy for you and your family!!!! My heart goes out to you for all the hard work you and your husband have done to help your daughter! I’m new to this journey of recovery and this gives me hope to keep going!

    Thank you so much for sharing!

  5. Carrie says:

    Way to stick with it and good for you for sharing your story! Your story is more like mine than any I’ve ever read. We’ve been working on recovery for 5 years or so and life has improved greatly. I wonder about those obstacles that remain for us as well… I thought I would know when it was time to let go and stop worrying about the symptoms, but I find that I don’t. I wish you peace and perseverance as you continue on this journey. Thank you again!

  6. Daniela says:

    Congratulations!!! Such an amazing story and so much in common!!! Julie, would you share your story with me please? on my persinal blog? my son just lost his duagnosis too and so far I am working on putting tigether more information for people with the same situations. Kindly email me. Thank you!!! Amazing!!!

    • Mish says:

      Please share your story Daniella. You guys can give the rest or us much needed hope. My son was diagnosed at 2 years 6 months 2 months ago and I wonder if we are a little late at starting biomeds and therapy.

  7. Karyn Hebbaz says:

    I am crying, I can’t stop. We, as parents, sometimes travel the world of autism alone, sometimes our paths cross, but I will bet you a million dollars (if I had it!) that every parent, caregiver, person who loves someone with autism, longs to hear those four little words.

  8. Liora says:

    Wow, amazing! Dying to know who this amazing Dr is! (And, maybe If you don’t want to say publicly, could you email me? Or give me a hint what city and I can try to find her??? )

  9. Julie,
    I’m with you, applauding so much progress and especially that you are attuned to your daughter.

    It’s this very thing – dealing with the symptoms that we call autism. If we mitigated these, would we still call the person autistic? My recently released book, Dragons & Daisies: Keys to Resolve Baffling Behavior in Early Childhood Education, helps parents and teachers support development.

    I’ve seen such amazing progress when we support wholeness verses trying to manipulate behaviors.

    Carry on – you are giving your daughter the foundation for success!

    Letha Marchetti OTR/L

  10. Nicole says:

    I have chills. Praise God for that doctor and her awareness! Praise God for the healing your daughter has received. Praying for your family as you continue on this journey. You’re so strong and I’m so thankful for you and those out there who are like you.

  11. Shelley says:

    My daughter lost her autism diagnosis on my actual birthday, May 15, a couple years ago! Best birthday present ever! Our kids can get better and recover! Today, she is a 12 year old, straight A student. She has friends, goes on sleepovers, and talks nonstop! So proud of her! Way to go for you and your daughter!

    • Daniela says:

      Hello Shelley,
      Would you please email me? would love to talk to you-my son just lost his diagnosis and I am working on a personal blog-would love to chat please. Would you share your story for my blog? Thank you!

  12. Correction for website I gave

  13. Please share the name of this doctor in your article and their practice info. Thank you
    [email protected]

  14. Chris Bell says:

    So awesome! Power to you and what a cool neuropsych!

  15. Jeff Craig says:

    I’ve seen “diagnosis lost”/ “diagnosis gone”/ “clean bill of health” before. It is truly good.
    But, in the past anyway, the doctors were NOT happy with it.
    They at best ignored it or shrugged it off.
    Too often, they were mad. (yes, ANGRY).
    And, in denial.
    They said the original diagnosis was wrong-inaccurate-never had been.
    Their ‘system’ and thinking simply did not allow for a cure.
    This is often, I think, still true today.
    For most people.
    And most doctors.

    • Jeff Craig says:

      (same Jeff as before) REJOICING to see more doctors are acknowledging it is possible to ‘lose the diagnosis’, and SAD to see more are censoring it and rejecting the whole idea, or trying to supress it (with full court internet censorship) …. “Mom’s Against Autism” with “no dairy” used to bring up a similar (I think) site of Mom’s worldwide with SUCCESS! ….. now it appears to be gone ? Anyone know ? …… Yes, mom’s around the world were being more successful than the ‘professinoals’ (sic) ! YEAH! YEAH ! GOOD ! Right? But the backlast was immense…. the censorship very thorough (it seems)…. Just like against the good for over 500 years black salve (just try to look it up these days…. used to be very popular and is still very effective) …
      (Regarding how to continue to speak out the truth, to help everyone ! ) It exhausts me daily; there’s more than I can do to get things “in order” daily….
      But I never give up ! HANG ON ! STAND STRONG ! YES ! By God’s Grace and faith in Jesus through all things, in all things, in Him. Amen.

  16. Nancy Bowers says:

    Praise God that progress is being made. The true diagnosis is chemical and heavy metal poisoning which causes immune system overload (swelling of the brain and destruction of the gut). God please let this information flood the TV stations and the radio stations and let the pharmaceutical companies tell the truth and accept responsibility for all the death and damage they have caused. God Please Let It Happen Today !!!

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