Reflections Upon D-Day (Diagnosis Day)

A year ago, we took Callum to see a developmental pediatrician.  And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed.  He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three.  We continued speech, occupational, and physical therapy and waited it out.

During this time, I read.  And researched.  And analyzed.  And over overanalyzed.  I blogged.  And socially networked.  And I had built up in my mind the moment when we would finally receive a diagnosis.  I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis.  I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down.  I thought it would be the really big deal it has been for so many of my special needs parent friends.

So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios.  I thought we would have a long wait in the lobby.  But they called us back immediately.  I expected a dreary wait in the examining room.  But the doctor walked right in.  I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc.  And I figured he would order up a full day of assessments at Shands.

Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change.  I was hoping it might go the other way.  But we are definitely looking at autistic disorder.”  He asked a bunch of questions about his behaviors and speech.  And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three).  He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction.  He suggested we contact the Gainesville CARD.  And he handed us a lab order for chromosomal testing.  And that was it.

Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?”  The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”

So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me.  No, really.

I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed.  My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year.  I realize it wouldn’t have made any difference in our day-to-day lives.  I’ve known since early on it was autism.  He has received therapies since the age of 19 months.  He has received the benefits of Early Steps and qualified for ESE Pre-K placement.   With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.

So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted.   Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together.  It was anti-climactic, to be sure.

Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing.  And after handing over our insurance information, we were denied.  The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty.  She explained that this type of testing cannot be conducted in the lab they demanded we go to.  They demanded his primary care pediatrician see him instead.  She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization.  The specialist demanded the pediatrician call it in.  The pediatrician’s office swore to call it in.  And then went to lunch.  We went to lunch.  We returned.  The pediatrician’s office then said it would be three days.  Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.

So, I discovered Children’s Medical Services across the hall.  Children’s Medical Services is a group of insurance programs for kids with special needs.  They were pressed for time, so the nice lady gave me a card with a phone number to call.  I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway.  And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs.  And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about.  And that guy was also awesome and directed us to some other resources.

(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity.  So a big “Thank you” to them.  You folks rock.   And a loud “Shame on you!” to Healthease of Florida.  Like Aunt Em, I can’t say what I think of you.)

So on my personal D-Day, I am reminded of the truth about autism diagnosis.  The label allows you to approach,  but you still have to storm the beaches yourself.   You still have snipers raining fire upon you.  You will see and hurt for the casualties of those just like you, also navigating their way through their battles.  And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder.  Yet you will know that your child – and every child – are worth any sacrifice.

For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”

But first we need some snuggle time and to crawl in bed.  A good book.  A glass of wine.  And some peanut butter fudge.  Then, after a good night’s sleep, we shall commence fighting in the morning.  We’ve had a long day.

So, what was D-Day like for you?

If you liked this post, you might also enjoy: “So You Think Your Child Might Be Autistic” or “From the Rooftop: Autism Disclosure”.

Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.

24 thoughts on “Reflections Upon D-Day (Diagnosis Day)

  1. Lisa

    I am left a little shell-shocked by the whole “he was diagnosed last year but thought it would go another way”. Whuck?! Anyway, glad you had some amazing people who helped you get through the day…here’s to blazing trails and fighting the good fight…because our kids…and so many others, are VERY worth it.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Yeah, it seemed a little…I don’t know…odd? lol I mean, he came across as really bummed out for us. This did not do much to inspire a feeling of “rah rah” in me. I kind of thought this was where he would be attempting to encourage us. It was more like, “We’ll just hope for the best. What a bummer.” It was a strange experience.

  2. Owen's Mom

    I was wondering the other day way it was taking so long for Callum to get a diagnosis, I just figured it was “everyone’s different”. Although I can understand not ‘getting’ the diagnosis from a year ago, when my son was diagnosed I actually took a few days and called the doctor’s office back for clarification. Some days it’s just to much to take in.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Well, I would have called except the doctor said he wanted to see what direction he went in and he wasn’t convinced it was autism. Apparently, he diagnosed him anyway as being on the spectrum and just didn’t mention it. Go figure.

      1. Owen's Mom

        Yeah, not sure how they expected you to know that was a diagnosis.
        Well at least you continued doing what needed to be done in the mean time :)
        I was in denial so it took Owen 4 years to get a diagnosis. Since the regular pediatrician said “yeah, there’s flags but he may just grow out of them”.

  3. Janine

    Good going for you, and all of those helpful people. Knowing your child needs help, and getting it are often very different things. We knew, and in my heart I knew, our boy was autistic the minute he climbed the stereo and jumped off, paratrooper style, when he was 7 months old (yep, SEVEN months). He was advanced physically, but not connecting with people. He also did not realize anything like physical personal danger, and was oblivious to hurts of all kind. This first stunt left him with his first tooth knocked out. He just laughed over it. I searched for baby sized helmets and found none, he survived in spite of the lack of safety equipment. He now is a nice, big (6foot 6, 250 lbs) 20 year old young man who is at risk for graduating from High School this year. He has lots of very devoted friends, and gets along with his querks intact. I love him, and really, we all love our kids, no matter the difficulties.

    1. Sandy

      Halfway through your reply, I had to stop and look at the name. I thought that my ex-husband had somehow taken an interest in Autism blogs and written it. My son is now 19 and he didn’t lose a tooth. He just got a giant (cartoon like) bump on his head. He climbed the stereo cabinet and “flew” down into a wooden bench. It’s amazing that some kids make it to adulthood…

  4. Katherine Gordy Levine

    MDs are sadly human and some very u-nattuned to the needs of others. Sigh. Bud sadly an ability to be a bit unaware is often necessary to make it through med school. Ask my husband, he couldn’t deal with the lab animals’ pain let alone human pain.

    Things are better than when I was taught in a very prestigious grad school by an expert in the field that Iceberg mothers were to blame. Didn’t buy it all, but did buy part of it for many years. I was also taught smothering mothers create asthma. Parents eventually helped me see the dancing. Mothers seeing their kids didn’t like eye contact or too much cuddling doing what the baby needed. Mothers terrified a child would die during an asthma attack becoming super protective.

    Still things are far from perfect and dwindling funds make it harder. I directed a Children’s Mental Health Crisis Programs. We often made the diagnosis, but with autism then could not continue helping the child. Crazy, and related to funding streams not human needs. Neither those dealing with developmental delays versus emotional disturbances want to give up their fiefdoms.

    I suggest two things to all struggling with a child with any emotional or social problem to begin seeking a competent parent advocate. No parent should go into a major meeting about their child without at least one outside source of support. When I first gained the power, I would take at least six staff members to school meetings. The outcomes were much better for the parents and kids. You are entitled to bring whoever you want to such meetings.

    The Federation of Families http://ffcmh.org/ has championed the use of parent advocates and contacting them through their web site should connect you to a reasonably good parent advocate. Warning as with any human services there are the good and the bad. You want one that is respectful to all, does not hate the medical profession, but is not afraid to speak up.

    You also need to have a mock meeting before attending the regular meeting. So everyone is clear on what the goal of the meeting is and what roles each will take.

    This post and writing my comment has made it clear to me I have to get some of my material up electronically, particularly my Challenging Children Course. It is a test based course that parent advocates helped me create. It was for parents of kids with serious emtional stress problems that had been referred to the welfare authorities who then insisted they take parenting classes. The course needs the segment on Learning Disabilities and Developmental Delays expanded, and proprobably a segment on autism added. Will ask for your reviews, suggestions and ideas when I get there.

    Thank you for making me think about this and for caring so much. It helps your kids.Stay strong as I tell myself at least a thousand times a day.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I know this is true. And I agree that it does make them better suited to endure the grueling nature of med school. But I would think a university child development center would have some kind of diagnosis counseling or something. Perhaps he was just giving me credit for what I appeared to know, but he didn’t even ask if we had any questions. It was kind of odd. Not odd as in I think he is incompetent. I just wish I had someone to sit down and talk to us about our son. Not autism. About Callum. If that makes sense?

  5. Jennifer

    Just wanted you to know… I’m sorry you had to go thru the diagnosis in this way. My son was diagnosed in August right after he turned 2. Although we got a handwritten paper diagnosis from the Developmental Ped. – We still had a whole series of testing to do – like genetics etc… ( my son also has a congenital heart defect so they wanted to rule out other things). But it took us 6 months to get to see a psychologist to get the “official gold standard ” CARS assessment – to say that my son was on the spectrum. So I was never sure who has the official authority over his diagnosis?

    With that being said… I love your posts!!! They help me sort through my feelings! I have 2 other children – Jackson’s sisters. 1- is 15 so she has abetted understanding about ASD but his other sister is 4 and your blog to your heir typical child was awesome!!!

    So thank you for helping me throughout this journey & I hope to somehow return the favor!!!

    Jenn in Memphis

  6. fureypartyof3

    I can relate to the “he was diagnosed a year ago” comment. Like we wouldn’t notice. I realize some people aren’t ready to hear the diagnosis, but deep inside, they hear it, and they never forget.

    When my son was first diagnosed, I asked “where do we go from here”? Their answer? “We’re referring you into the community”. I kept pressing and asking in a variety of ways what that meant, and finally I just said “what you’re saying is, we’re on our own”, and they said yes. This came from Children’s Hospital, a highly respected and renowned facility in the Pacific Northwest. No checklists, no lists of people to call, no opinion on if what we were doing at the time was appropriate – nothing. Just a “referring you into the community”. I left in tears. I felt like they just threw me overboard out in the middle of a vast ocean and didn’t even bother to toss a life jacket after me. Sink or swim. Fortunately, I learned how to swim pretty darn quick :)

    I’m so glad you got some great information and resource direction while you were there! There’s nothing worse than leaving something like that and basically being told you’re on your own. I already knew that, but to find out the medical community wasn’t interested in helping me was quite the disappointment. I always knew I’d have to be the project manager of my son’s care, but to be tossed into the street with no resources was stunning.

    Best to you and your precious boy. He’s got a great advocate in you!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Yeah, I found out today that the brochure he handed me was for a program that closed weeks ago. Ironically, the woman who headed it have me more useful information than the doctor! I swear I’m going to start a site called, “What To Do Now” or something to that effect. With printable info sheets for doctor’s offices to give to patients. The doctor didn’t even know I was a blogger or that I have family experience with autism. He didn’t even explain what autism is. Can you imagine what parents with no experience with this would think?! I wasn’t looking for hugs, but most doctors at the very least explain a diagnosis to their patients…

  7. Robin

    Being an autism mom is a constant battle…and I am fighting for two! But I will not give up. I commented on facebook recently about living in FL and hoping you knew about CARD. Contact them! They have so many awesome resources and it is all free. They even came to my house for several days and did intensive potty training with my daughter!! FOR REAL.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I remember that, Robin. And thanks. I did know about it, but I hadn’t called until I got a diagnosis. It probably wasn’t necessary to wait, but I did. However, I emailed them today and hope to hear from them next week.

  8. Jim Reeve

    I can see your frustration. We kind of went through the same thing when our son was diagnosed. Some doctors felt he had it and others didn’t, so it took a while to get the official diagnosis. The good thing about our situation was that our son was very high functioning and that’s why he was difficult to diagnose. So hopefully you can take comfort in the fact that Callum isn’t extremely autistic.

  9. stephstwogirls

    OMG I still can’t really believe this – that they think they had diagnosed but somehow just ‘forgot’ to confirm it to you?! You’re right, the actual diagnosis does allow some sort of grief and relief to come out, but it seems like they denied you this – rubbish communication and no consolation for you. Glad to hear you are getting help from somebody – but really, why do we have to be forced to the point of crying to get that help for us and our children? It’s no different here I’m sorry to say. Hope you continue to find comfort in blogging, I know I do x

  10. Mel

    Unfortunately,what happened to you isn’t uncommon. Heard very similar storied of kids getting a dx and parents not officially being told!

  11. Leanne

    Child directed Interaction or Parent Child Interaction Training, PCIT for short, is a phenomenal program! We got referred to the program essentially by accident, but it was the best accident we’ve had. Although a lot of the principals weren’t new to my husband me, their implementation was, and it radically changed our family. It gave us life long tools and significantly improved the attachment piece in both of our sons, especially our youngest who has ASD. Feel free to contact me for specifics. While in the program I was often asked by the director to talk to new families about what a difference PCIT was making in our family.

  12. Donna

    What timing!

    My 12 year old was diagnosed today with autism, probably Asperger’s. Even up until the minute it was said, I had this gnawing, aching fear that they were just going to tell me my kid was a pain in the backside and there was nothing “wrong” with him.

  13. Tracy

    It took me three glances to see that your insurance name is Healthease. I was totally reading it as Healthtease. I thought you were being funny. :-/ Our dx was also anti-climatic and we were sent on our way with a packet of papers to explain the testing done, the diagnosis, and to give us suggestions on what to do next. The “suggestions” basically consisted of “get therapies”. No description of what sort of therapies or where to get them.

  14. Lynne Pardi

    Reflections on D-Day (Diagnosis Day) certainly brought back a flood of memories!! Our son’s autism diagnosis didn’t exactly come in one day either. There were the “signs” and the suspicion of autism that hung over us for a year before the diagnosis was official.

    The part that really struck an emotional chord was when she described the struggles with her insurance provider to get coverage for tests for her son. My own son was diagnosed back in 1989, when there was much less awareness of and even less help offered for these children. We had to fight our insurers and our public school system “tooth & nail” for desperately-needed services!

    It is hard enough just coming to grips yourself with your child’s autism and dealing with his/her behavioral issues on a daily basis and doing your own frantic research to equip yourself for the challenges you’re facing!! Having to “do battle” with ignorant or uncaring bureaucracies to get help for this precious little person who is depending on you should NOT be “par for the course”– but it is!! It is so very “draining” on parents; and, often the lengthy battles delay getting tests, evaluations, and services for a long time. This is tragic, because we now know that the earlier these kids start receiving interventions & therapies, the better their prognosis!

    Yes, we parents WILL continue to fight for our kids. This Mom makes the point so touchingly and so well. Parents will continue to be the heroes in their childrens’ lives. I just hope to see a day when we won’t have to expend quite so much energy on fighting for what ought to be our childrens’ basic rights.

  15. beebsandbro

    In the beginning you hear a million times “you don’t get the autism diagnosis until they are at least three” How could you have known. The same thing happened to me with my daughters CP diagnosis. She got it at almost 4 years old by a neurologist, but looking back in paperwork an orthepedic doctor at San Diego Childrens diagnosed her with CP almost a year before. Pretty sure I would have picked up on that if I was told! Would have been nice to know! Thanks doc! Sorry about D day. My Autism D day set in a few days after. I think when you just know for so long it doesn’t seem to hit you as hard as you thought. You obviously have been a very active parent and haven’t taken the denial route. That helps the blow. A little.

  16. admin

    I’m a single mom and after my daughter’s diagnosis I applied for SSI, at the urging of our dev. ped. at Kaiser Perm. who gave the diagnosis. After I applied and got the SSI, that’s when the trouble began: after the transition from state medicaid to SSI medicaid, we lost all of our doctors, because apparently, while SSI medicaid will pay for the services of any doctor, the trick is to find a dr WHO WILL TAKE IT. Basically, many clinics will take “welfare” medical, but not “disability” medical. (I spent about a year screaming WTF about that.) We did finally find a great ped who opened a local clinic just for families experiencing our situation, however, we no longer have a developmental ped now. HOWEVER, we do have a great OT clinic and without SSI we were only able to get the lame, watered down OT given by the school district as part of our IEP, so now we get “real” OT, which is also an improvement. It’s always going to be a battle–gain some ground inch by inch by not without some degree of loss.

  17. Karla A.

    My D day was on the day before my 30th birthday (woohoo let’s celebrate!). They sat down and asked “have you heard about Autistic Spectrum Disorder?” Even though I kinda knew…it is needless to say I spent my bday crying and not partying.

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