Diagnosis Autism, A true story.

autism    Alex was just like any other baby, I suppose.  Although, I took great pride in the fact that he did everything so much earlier than the “What to Expect” book said he would.  He was even walking just shy of being 8 months old.  That should have warned me that he was going to exhaust me, but at the time…I was just tickled pink and recording everything on our camcorder (okay, so it looked more like a television camera than a hand held, but hey…it was the mid 90s and we were young and frugal with money).  Where was I?  Oh yes…Alex did everything early.  Everything but talk, that is.  He did have a few words by his first birthday.  He would say, “g’day” in tribute to his first crush…a very pretty Australian friend of ours.  He would say Hi and Bye.  Just like our stubborn little bundle of joy and havoc…he refused to say mama or dada.

By 13 months, he still wasn’t talking.  However, on the very day he hit that milestone he also contracted a wicked case of chicken pox.  He had them on his eye lids, the palms of his hands, his privates, and even in his mouth.  He screamed for about a week and then he just oozed and scratched while chugging Atarax for the itching, bathed in oatmeal, and slathered on Calamine lotion.  Did I mention that his dad was only home for the first few days then he went off on a deployment to New York City for Fleet Week?  Lucky “insert word for fatherless man here”.    (By the way, to all those wondering why he wasn’t vaccinated.  The vaccine was still quite young in 1996 and they weren’t giving it to children younger than 2 years old.  I also wanted to wait and see the long term effects before giving my son a shot for a virus that kills very few of its victims)

Not long after Alex recovered from the chicken pox, I began to notice that he had started walking on his toes.  I had no idea at the time, but this was not a good sign.  He also lost eye contact and wasn’t running towards me when I called his name.  Before I knew it, he had stopped saying those 3 words of his and began babbling incoherently. 

At 15 months, I started asking his doctors why Alex wasn’t talking.  I was told that it was probably because he was an only child and all children develop at different paces.  Each time I took him to the pediatrician, I would ask whatever doctor he saw at the military clinic that day and I always got the same answer.  Don’t worry.  It will come.

My husband left for our first six month deployment in April of 1997, soon after Alex’s 2nd birthday.  About one month after that, I get an out of the blue call from my mother in law (we have never been close).  She was quick and to the point.  “I think Alex is autistic.  David is autistic (her youngest son) and I think Alex is too.  Okay, I gotta run now.  Take care.”  I was very angry.  I mean, she had almost a year of her son being home to tell us both or she could have waited six months until he got home to tell us.  But no.  Something inside of her said, “Gee, let me wait until she is all by herself for half of a year to tell her this news that could just kill her.”  We still aren’t close.  Can you tell?

I whisked Alex away to the clinic and began asking about Autism.  I explained that there was a family history and that Alex still wasn’t talking.  In her very thick accent the doctor said, “He no autism.  He happy child.  He no bang head.  He no rock.  He only child.  You anticipate need too much.  You put him in daycare and he be fine.  You see.  He no autism.”

Two weeks later, I walked back into the clinic and saw the same doctor.  She had no recollection of ever seeing Alex.  Big shocker.  I lied and said I thought he was deaf.  She wrote a referral to the Navy Hospital at NAS Jax.  It was denied, of course.  I was beginning to get frantic.  My mom, an independent medical transcriptionist, spoke to one of the doctors she worked for and got an appointment for Alex (no charge.  He was former military and understood the problems with the system).  He was honest and said that Alex’s case was confusing.  He was a happy child and he was fairly social.  But he wasn’t speaking and had poor eye contact, which was a problem.  He told me to go back to the NavCare Clinic and demand a referral to the children’s hospital for a hearing test.

Alex passed his hearing test with flying colors at the end of June.  However, the audiologist pointed out that Alex had no stranger anxiety, no eye contact, was walking on his toes, flapped his hands, shook his head, and wasn’t talking at all.  Her unofficial diagnosis was Autism.  She pointed out the steps necessary to get a formal diagnosis and told me not give up and keep insisting on getting the referrals she suggested.

Next was the speech language pathologist.  This brought us to July of 1997. I had been seeking an official answer for 3 months now.  She was hesitant to confirm diagnosis, again because Alex was generally happy and social.  She could only say that he had a severe language deficit and recommended Early Intervention services.

Alex was enrolled in a part time developmental day care run by Easter Seals by the end of July.  Early Intervention ran faster than the military medical benefit known as Tricare.  Alex had seen a developmental pediatrician and a school psychologist.  Their “educational” diagnosis was “developmental delay”.

It was the middle of October  ( the day before my 24th birthday to be exact) before I could get the necessary referral for Alex to see a Neurologist.  This was the final step.  Before the formal diagnosis of Autism could be given, the neurologist had to rule out every single other illness, disorder, or disease, that even remotely resembles Autism.  There were 2 sleep deprived EEGs to look for seizures, an MRI to look for brain damage, DNA tests to look for Fragile X and other disorders, metabolic tests to look for something I can’t recall anymore, and blood tests to look for lead poisoning and everything else under the sun.

Somewhere in the middle of all these doctors’ appointments, tests, and educational treatments, I had to decide whether to let my husband know what was going on.  How do you tell your husband that his only son, indeed, his only child had Autism?  And how do you do it when he is tens of thousands of miles away on a ship knowing he can’t come home?  I will tell you.  You email him and tell him that he needs to call home ASAP, even if he has to perform unsavory favors for his multitude of bosses.    What does a father say to his news?  “Get a second opinion.”  By the time I told him, I had already gotten the audiologist, speech therapist, and Early Intervention involved. There was no coming home early to be a family through this.  There was no way to comfort each other with all the miles between us. It was what it was.

Alex was barely 2 when I started the process of getting that diagnosis.  He was nearly 3 by the time it was formal.  It was a long and painful process on everyone’s end.  Many of the parents I speak to today did not have quite as long an ordeal nor did their children get the same tests performed as Alex.  However, I am grateful that my son’s numerous doctors covered every possible base before they would say he had Autism.

How long, on average, do you think it takes to diagnose a child with Autism?

 

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0 thoughts on “Diagnosis Autism, A true story.

  • June 20, 2009 at 6:36 pm
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    I teach ASD children in a mainstream school the UK.Over here, diagnosis has taken as long as 2 years, and as little as 3 months, from me going “hey, we need to look at this child properly.”  A lot depends on how long the parent pushes and how obvious the ASD is.

    *hug*

    Not even every ASD child is the same, which means their diagnosis is so hard.

    Reply
  • June 18, 2009 at 1:36 pm
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    @strappleberry_xD@xanga – Nowhere did I make fun of anyone’s accent.  I stated it as a matter of fact, a large part of my memory of the first step I took in finding out what was happening to my son.  Did I call anyone names?  Did I mock?  No, I did not. 

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  • June 18, 2009 at 12:44 pm
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    Okay, first of all, this site was created to search for answers, share information and stories and to help each other. Since you’re a mother of a child with Autism, I think you understand the challenges with your son’s acceptance and what not. It’s not okay to make fun of a child who’s different, so when is it okay to make fun of someone who doesn’t have a proper grasp of the English language? Although the doctor you mentioned probably couldn’t tell your son had Autism and had a very thick accent, she was still trying to help. I know I’m being sensitive here and I understand you’re trying to add humour to this post to lighten things up, but I think next time you should watch what you’re writing down.

    To answer your question – on average it’s 14 months to 3 years, but a 2009 US study found that 27% of children remained undiagnosed at age 8 years. In your case, I don’t think Alex’s diagnosis was delayed. Sometimes it’s hard to catch.

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  • June 18, 2009 at 12:07 pm
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    I’ve suspected autism in Josh since he was just a few months old. He is now TEN, and I still can’t get anywhere. The doctors I have talked to have said, “Well, if he is, it’s mild enough not to worry about it.” It is frustrating. We’ve had insurance issues, so that hasn’t helped any. I guess I should be thankful that it does seem mostly mild enough to deal with on my own, teaching Josh the things I had to learn myself… but dang it, it would be nice to have a little back up. I am extremely grateful that I had my mom through his earliest years. If it wasn’t for her, he’d probably be much more delayed than he is.

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  • June 18, 2009 at 7:25 am
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    It took over 2 years for us to get Short Stack diagnosed.

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  • June 18, 2009 at 12:15 am
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    @amy – I’m not diagnosed with autism, but I kind of wish I had known sign language as a kid.  It was almost impossible for me to communicate with my parents when I was little, I’d always get too frustrated and even now it’s kind of difficult to a lesser extent.  I wonder if knowing ASL would have helped me in that…and I wonder why it’s only for Americans…

    Reply
  • June 17, 2009 at 11:11 pm
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    My younger brother has almost the exact same story as your son, they tested him for autism  3 times and all came back negative we have been seeing doctor after doctor specialists, speech teachers, everything and finally now after 3 years they have diagnosed him with autism.

    For my brother not being able to talk and communicate as made him angry and he acts out because of it I don’t know if you have the same problem but teaching him kid sign language has really helped he picks up on it SO good and now has a way to communicate with us. 🙂

    Reply

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