Autism: Say what?

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Follow a story of a family whose little boy was diagnosed on the autism spectrum and the steps they took to overcome this diagnosis.

This story is a personal one and should not be taken for any medical advice. This is simply parental advice. If you are questioning the behavior your child is exhibiting please talk to a medical professional to attain a diagnosis through an evaluation.

 

By Becky Horace

We came back from the States and the first thing I did was make an appointment with a speech therapist. With no referrals or any idea of who to see, I looked on the local hospitals website and picked a doctor and made an appointment. A few weeks go by and we are finally seen. Two hours spent in the waiting room with a small child was not fun and to top it off the kid was cranky and tired. He was over being there and so were we. We go into the speech therapists office and she watches him for a few moments. He tries to get him to pay attention to her with toys, bubbles, really anything but he is not having it. She looks at me and starts to speak. I am hoping to hear “He’s just a kid. He will get over this big adjustment and be fine, please give him some time.” but instead she says “let’s get him evaluated.”

Evaluated? What does that mean? I see her lips moving but time had slowed down and I couldn’t make out what was happening. What does that mean, evaluated for what? What could be wrong with him? Tears started rolling down my face. She tries to reassure me it’s just to rule out anything serious. What could be serious? What is she talking about? I ask her what is she implying and she says “autism.”

I can’t breathe. Autism? What the hell is that? I mean I have heard of it but I don’t really know what that means. I have seen movies with an autistic kid in it. He isn’t screaming and running around acting crazy, no way it’s autism. Through my tears, I agree to another appointment with a specialist at the hospital. This appointment was two months away. She gave us some tips on how to boost speech and said if he were to start talking and snap out of whatever was going on then maybe there was no issue.

As the months go by, we had issues with our helper in the house and she leaves but as soon as she is gone, our son seems to be the happiest he has ever been. He starts babbling and using some words and is just so happy. I can’t help but think it was just the bad attitude from our helper that was causing all of his issues but in the back of my mind I knew the appointment was rapidly approaching.

The day of the appointment arrives and I couldn’t feel sicker. I am so nervous I am shaking. I can’t do this. What is this person going to tell me? He has maybe a slight delay caused by the trauma of the mean helper and the move to Bangkok but then turn that into something huge? We wait in the waiting room for over an hour and half with a little boy who didn’t nap. You can imagine how well this appointment was going to go.

We enter the office and an old woman was sitting at her desk. She starts to observe our son and asks him to sit down. He is not interested in sitting down. He just entered a new place with stuff to touch and explore. She pulls out the Denver II test to gauge how he is doing developmentally for his age.

What is the Denver II Test?

DDST, The Denver Developmental Screening Test, also known as the Denver Scale is a test that screens for behavioral and cognitive problems in young children. This test takes the parent’s information from observation and observation from a professional; to complete a screening. The test is comprised of four sections: fine and gross motor skills, language, and social contact.  

She has him stack some blocks. He does a few and loses interest. She asks him to point to body parts. He doesn’t seem to acknowledge her. She then holds up an orange, places it near her mouth to get him to look at her, and says orange in Thai. My son is an American who only speaks English. She continues to hold objects up to her mouth and speaks in Thai. I look at my husband in amazement. What is she doing?

She looks at me and says the test and her assessment, which lasted maybe 20 minutes, shows he is delayed. She says he should have more words, those words should be combined into two word sentences, he should be able to point out body parts, he should be able to stack more blocks then he had with her, and (this is my favorite…) “he doesn’t seem to react when I speak in Thai to him.” YOU ARE SURPRISED THAT THE KID WHO DOESN’T SPEAK THAI DOESN’T HAVE ANY IDEA WHAT YOU ARE SAYING WHEN YOU SPEAK TO HIM IN THAI AND THAT HE LOOKED AWAY FROM YOU?

We are told he is too young to diagnose or really to do anything about it. She says his biggest delays are in speech and his social skills since he does not maintain eye contact. Our son was also exhibiting some repetitive behaviors when he was excited like spinning around in circles and hand flapping.

She gave us some “useful information” if you want to call it that by showing us some things we could try at home. She suggests no screen time ever again (this is an opinion I do not currently agree with but I will write more about that later). She tells us not to withhold anything from him, in that if he wants a cracker you give it to him and say the word instead of trying to get him to say the word himself. I don’t feel that this is enough information to make a difference or to help our son and ask if we can go to speech therapy to help him or really if there was any professional that could help us further. Her response is “It will be hard to find a speech therapist who can speak English well. You can figure it out on your own and do all of this at home.”

Tips from the mom:

  1. If you believe the evaluation you received from a professional is less than professional like the one we had described above, do not wait and make an appointment for a second opinion.
  2. Unless you are a trained professional with experience in dealing with developmental delays please do not think you can “fix” your kid at home on your own.
  3. If you do get a diagnosis of “delays” take heart. You are taking the first step toward helping your child. You will get through this together!

After that appointment, I was an emotional wreck. I wasn’t sleeping. I worried all the time for my boy. I was not the least bit concerned that he might be “delayed” or what that meant I was more worried that I am now tasked with the “job” to “fix” my son alone with no professional guidance. As you can imagine accomplishing this grand task on my own didn’t go well or last very long…

 

This will be an ongoing series of articles of our story through an evaluation, diagnosis, treatment and the end results during our son’s last two years of therapy. I will share with you from a parent’s perspective what we have learned and in layman’s terms explain our son’s diagnosis and the types of therapy used to help him succeed.

I hope you enjoy this read and please know no matter how bleak it may seem you are not alone when you are going through this. Parents around the world are in your same shoes looking for support and love; you just have to be open to talk about it. 

 

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