December 26, 2014

How Did You Know He Has Autism?

The most common question people ask me is this: How did you know he has autism?  This is an understandable question.  Most people are pretty unfamiliar with what autism is - thus, my blog.  Brandon doesn’t have any physical characteristics of a disability.  In fact in the begining, some of my friends and did not believe me, and made me feel like they thought I was trying to make something out of nothing.  It’s not obvious that he has autism until you spend some time with him.  Even then, (when he is having a good day) people unfamiliar with developmental stages at his young age don’t realize he is delayed unless they see him alongside another child his age.  Often when we’re out and about, such as the grocery store, someone sees my adorable little boy and tries to say hi to him or ask him a simple question.  I don’t go into Brandon’s whole story to a stranger in passing, so they probably think he’s just shy…or rude!

So how did I know? The truth is, I didn’t know...not at first.

A Regular 15-month Check-up
When I took Brandon to his 15-month check-up, our doctor asked a series of standard questions for that age.  He was saying "mama" and "dada" but, when she asked if he responded when I call his name, my answer was no.  “He doesn’t even look.  In fact, it’s something I wanted to ask you about.  I know he can hear though, because he comes running when he hears his favorite TV show.  Here watch this,” I told her.  “Brandon!” nothing. “Brandon!  Brandon!,” I said louder.  Still nothing.  She told me not to be alarmed, but she wanted to give me an M-CHAT screening to fill out about Brandon.  I had no idea what that was, but I remember my face feeling hot and flushed.  How could I not be alarmed?  I didn’t even have any idea what an M-CHAT was.  All I knew is she needed to test my child for something wrong with him.  She explained that it was an autism screening tool.  These were questions about his development.  I relaxed completely.  My child did not have autism.  (Not that I even actually knew what autism was.)  I was not worried about that.  But I would take the questionnaire anyway.  I started to read the questions.  Some of them, I knew he should be doing by now.  For example: If you point at something across the room, does your child look at it? Or, does your child show you things by bringing them to you or holding them up for you to see - not to get help, but just to share?  He didn’t do any of these kinds of things.  At all.  I still wasn’t worried though.  He was only 15 months old.  Children develop and different rates.  There were so many things he did far ahead of his peers like holding his head up, rolling over, sleeping through the night, walking, etc.  At the time I suppose I didn’t realize these were all gross motor skills.  He still has superior gross motor skills and strength.

My doctor told me that the screening did come back positive, although it was low-risk.  She was adamant that this did not mean he has autism.  She recommended that he have a developmental evaluation.  I called right away to schedule an evaluation at the children’s hospital where we lived at the time.  In the meantime, he had a hearing test which was inconclusive.

The Initial Evaluation
He was 17 months by the time we had the evaluation.  I would come to realize that even though early intervention is key, everything takes forever to get started.  After a series of activities, a team of doctors and therapists told us that autism is not typically diagnosed until a child turns at least two but, “We really do not think he has autism.”  I was so relieved.  They were diagnosing him with a global developmental delay” and said that we should get started with early intervention services right away.  “Well, that makes sense.  Technically, he is delayed developmentally,” I thought, still not alarmed.

Eventually, I Just Knew
By 18 months, Brandon had started early intervention with a developmental therapist.  By the time Brandon started those early intervention services, three months after our initial concern, I knew.  I had done enough research to know that my son had autism.  He hadn’t “caught up.”  Three months is a long time at that age, developmentally.  I had come to realize there were many other parts of his behaviors that lined up with autism.  He still didn’t respond to his name.  He didn’t understand anything I said.  He understood, “No!” but it was really just the tone of voice that he understood.  I could have replaced the word “no” with anything.  He obsessively lined like items up by threes.  He spun in circles over and over.  His eye contact was very minimal, and he seemed to be in his own world.  Most noticebly, he stopped saying "mama" and "dada" and he was not saying any words.  Today, at almost three-and-a-half he only has a couple of words, and has to be prompted to say them most of the time.

Throughout this time we had two more hearing tests, which were again inconclusive.  They were in a tiny room, and they expected him to react to things I knew he would not be interested in.  We needed to rule it out though, so the next step was an ABR.  This is a hearing test where they put him under anesthesia to track his brain waves and see if there is a hearing problem.  We needed to get this done before his next evaluation.  To be honest, I was hoping I was wrong about this too.  I was actually praying that my child had a hearing problem.  What a weird thing to say.  A hearing problem was easier for me to imagine coping with than autism.  The test came back saying he had no hearing problems.  It was the epitome of a bittersweet situation.

Your Child Has Autism
I called and made an appointment for an evaluation for less than two weeks after he turned two.  By that time it was just a matter of getting an official diagnosis.  I didn’t tell the psychologist that I “knew” he had autism.  I didn’t want to put any ideas in her head.  I was still praying that he didn’t.  She went through everything, and it told us it was clear that Brandon has autism.  I said, "Okay.  Where do we go from here?"  When we discussed next steps, she mentioned that I didn’t seem suprised and I was handling it well.  I then told her I was expecting it.  I was hoping it wasn’t the case, but I was prepared for it.

It wasn’t this major shock like many people have when their doctors said, “Your child has autism.”  It was something I gradually came to terms with as I observed my child from a different perspective.   I may have been prepared for the diagnosis, but I had a lot to learn about autism.  I still do, as he goes through different stages.

Brandon was diagnosed early..less than two weeks after he turned two.  This is a pretty early diagnosis.  I am not modest when it comes to admitting that I am proud of this.  I know how easy it can be to get caught in the denial stage.  If I hadn’t had a pediatrician that caught the mere potential for a developmental disorder, there’s no way Brandon would have been diagnosed as early as he was.  He certainly wouldn’t have gotten early intervention services as soon as he did.  I will be forever grateful to that doctor.  She changed everything.


11 comments:

  1. Reading this has made me relies that I'm not alone and there are other parants who have autistic children! And there afraid to admit, I think I was scared of letting myself no my son was autisic knowing my son was going to face difficultys everyday of his life! But reading some of your stuff has made me realise that it's who he his and it's apart of him. He's my son and I shouldn't be ashamed to she he has autism (that I was) but to embrace the things he loves and that I have! To me he I've opened my eyes and he younique and he's my BOY ❤️
    (January 10 at 2:52 AM)

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    1. Saffii, I think was was lucky that I was kind of eased into his diagnosis. There was never this huge shock factor. I can understand how easy it would be to get caught up in full blown denial, though. No one wants to hear that their child is going to have to struggle. My post precious moments with Brandon are embracing the things he loves. :) I am thrilled that you have been able to relate to my stories! Thank you for commenting!

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  2. That's amazing that your doctor was so willing to consider the possibility of autism; most peds are very reluctant to suggest this (why I have no idea--perhaps they worry about offending a parent or encouraging helicopter moms). I had to practically beg our then-pediatrician for a referral. And I, too, had to perform a kind of show-and-tell to get them to take me seriously (that hit home for me!). Milo was 2 years and nearly 3 months at his diagnosis. It feels like a lifetime ago, even though it hasn't even been quite a year. I can't even remember "before." Great post, Rachael. Thank you so much for sharing Brandon's story.
    (December 29, 2014 at 6:23 PM)

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    1. She was so professional. She didn't try to alarm me, but made sure I had the information I needed. This was before we moved back here, so she has no clue of what Brandon is doing now. His first evaluation was where we used to live, but he had is ABR and was diagnosed here. These are details that complicate his story and every step we had to take even more, but was too much to explain in this post! I have the most wonderful pediatrician here. Truly. Anyway, I plan to write his previous pediatrician a letter, thanking her. She really did save his life, and she has no idea!
      (December 29, 2014 at 9:43 PM)

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  3. Loved this post. So proud of you sweet friend
    (December 29, 2014 at 4:15 PM)

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    1. Thank you Danielle Wingate. I was just talking about you with someone from CP. Miss you!
      (December 29, 2014 at 9:44 PM)

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  4. Similar situation. Great info here!
    (January 7 at 8:04 PM)

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  5. I can relate to a lot of your blogs,especially the one on your sons diagnosis. It was like, you were writing what I experienced. Its nice to know that I am not the only one going through the good and the not-so-good-moments.. Love your blogs. I try to keep up on it.

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    1. Thank you! I am trying to keep up on it as well :)
      I just got a new job, so things have been crazy around here. Thank you for reading!

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  6. This information will help those suffering from AUTISM, my son was also a victim. We noticed some of the signs at age five, He was experiencing challenges like (lack of interaction with others as well as his nonverbal behavior, classroom readiness skills, sitting, raising his hand, self control, etc.). when he was diagnosed with an autism spectrum disorder, I felt heartbroken. The news no parent wants to hear.
    We had reviewed different treatment programs and based on the scientific evidence, we felt Applied Behavior Analysis (ABA) would be the most effective treatment for our son which was going to take years but I remember and am thankful for a friend and colleague who referred us to Dr. RONNIE for his herbal medicine. Though he has dealt with countless obstacles to get to where he is today.
    If your relative or someone close to you is suffering from AUTISM, don't be ashamed of it, I can guarantee that his herbal medicine will work for you and I suggest you try it. It has done wonders for my son.
    Contact him on ronniemd70@gmail.com for more information and advice.

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  7. As a sign of gratitude for how my son was saved from autism, i decided to reach out to those still suffering from this.
    My son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication, , and he always complain of poor eye contact . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to autism . I never imagined autism has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism has a cure and it is a herbal cure contact the doctor for more info on drwilliams098765@gmail.com on how to get the medication. Thanks for reading my story

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