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Autism test for my son was not part of my dream...

Autism (let alone an autism test) was not the dream for my handsome little boy

I wasn’t always this receptive to speaking about autism or being spoken to about autism – let alone having a child of mine take an autism test. 

Autism was definitely not the dream for my handsome little boy when I first knew I was pregnant with him, or when I first held him in my arms; crying shamelessly and at the time sending my mother running after the nurses – to make sure they did not exchange my baby for another!

Yeah, my mum thought I was crazy but indulged me anyway, taking multiple photos of his first bath, and waiting with him in her arms for hours as I slept on that first day of his life. She adores him still…

An autism test was not the plan a day before my boy turned one

Autism was not the plan I had in mind when I told his father (my ex) rather valiantly that I would raise him and that he was free to do what his conscience allowed him to. Autism – or the autism test – was still not the plan a day before my boy turned one, when he took off at a run across the room to his grandfather’s waiting arms. It was not the plan during his birthday the next day when he walked round on unbalanced legs showing off his new walking skills.

“Your child cannot hear”…

My baby turned two and the terrible twos descended on us. When I reflect on that year, I can see exactly when and where he got quieter and moved closer to the TV. At age three with a tonsil infection and pneumonia, we were admitted at a local hospital and on discharge asked to see a consultant ENT. His first words to me were “Your child cannot hear.”

I was stunned!

He had not touched my baby, how could he tell? He asked if my boy would answer when we called his name, I said sometimes. I had assumed his lack of response was something to do with his new two year old attitude. I had assumed that his getting closer to the TV was because he liked the shinny screen. I had assumed……Well the tests confirmed the diagnosis. My son had 75% hearing loss in one ear and almost 100% on the other. I cried.

I had assumed his lack of
responsewas something to do
with his new two year old attitude.

We scheduled surgery to remove his adenoids, tonsils and put grommets- tiny tubes inserted in the ear to help drain fluid from the eardrum. We then had a 9 month period for those to fall off naturally then get re-tested for hearing. We confirmed that he could literally hear a pin drop (still does). I then waited for him to speak. I had been told that lack of hearing affects speech development so I was like “So now you can hear… speak!” Many people of course had their theories… you’ve heard the one about boys speak later than girls etc.

I turned to the doctor we all know – “Dr. Google”

I waited until he was 5 years old. By then I had started noticing other things… I had lifted my besotted mummy shades a little and started looking at other kids his age: I noticed the differences and visited pediatricians; we got an ECG scheduled and still made more visits; we were even sent to see a speech therapist…. BUT no diagnosis. No hint of what was different with my boy, so I turned to the doctor we all know and visit more often than we should….Dr. Google.

Dr. Google suggested Autism. Dr. Google sent me on a chase round hundreds of pages and articles. About autism – and an autism test. And other autism issues… I cried so much that year. Finally one day like a ray of light, a doctor doing mission work at my parents’ church diagnosed my son. He said it was PDD NOS… PD What? You may ask. Pervasive Developmental Disorder Not Otherwise Specified…Part of the autism spectrum disorder.

The autism spectrum is called a spectrum for a very good reason. The diagnosis may be autism but how it presents is as different as the kids themselves. Think of the spectrum like an umbrella. Under the umbrella you have Low Functioning Autism, High Functioning Autism or Asperger, PDD NOS. Other diagnosis under the umbrella that children may have include ADD, ADHD, Dyslexia, Sensory Issues, Dyspraxia…

My tears dried up

Now that I knew what the thing that was different about my son was, my tears dried up. It does not mean that I do not cry, but I knew the diagnosis and so I could deal with it. You will notice that I say “I” a lot “I” could…, “I” did…, all this time my son was ok. You see autism is his normal. Having autism means that he processes information differently from the way you and I do, BUT he processes. There is absolutely nothing wrong with my boy. He just has autism.

What I discovered I needed to do, was learn his way of thinking; his way of processing. Start seeing things as he did, and now I get it! Not always though – I am a work in progress – and when I do not, then my mummy instincts lead the way and I am almost always on point.

Lessons learnt?

  • You need to find someone who will look you in the face and name the thing you know is different with your child.
  • You need to find other people who are dealing with the same issue – and those who have taken the autism test; so you can ask ask ask questions in a safe space. For me this has been Kenya Autism Alliance. There are so many super parents on that network.
  • Roll your sleeves and start fighting. Fight for your child. You will note that there are NO free services in Kenya and barely enough service providers. You will need to take a front row seat with your child and not move until you feel they are getting the best from everyone.
  • Read widely, do research…find out what kind of autism parent you are… there are those who believe recovery is possible and those who do not. Decide which one you are and pursue that for your child.
  • Find the diet that works. Many parents swear by the GFCF diet- Gluten Free and Casein Free…try that , we could all use less wheat but also remember that not all children need that diet, and that gluten and casein issues are not the sole purview of autistic individuals. A whole lot of neurotypical persons have those issues.
  • Find what works for your child. Take an autism test. Research supplements. Talk to nutritional experts. There are very many natural supplements that will do not only your autistic child but your whole family good.
  • DISCOVER your inner child. I found that if I was willing to play as my child did, he soon started taking an interest in other ways I wanted to play. I became his friend.
  • Finally and take it from an autism mom, It is alright. It really is and You will be fine and so will your kiddo.

Jaki Mathaga is mum to a 10 year old boy on the Autism Spectrum. She heads a Corporate Non-Profit Organization by day and uses the balance of her time doing advocacy for autism. She is President of the Kenya Autism Alliance, a parent led and managed network of Kenyan parents of Autistic Children, Professionals in the Autism field and Caregivers of Autistic children. Twitter @Kenya_Autism

She is also a Fellow of the Vital Voices Leadership Program. An organization that supports women leaders worldwide. jmathaga@gmail.com


BLN Note: “Autistic disorder (also called autism; more recently described as ‘mindblindedness’) is a neurological and developmental disorder that usually appears during the first three years of life.” (http://www.alutfriends.org/)
“Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. Parents usually notice signs in the first two years of their child’s life.” (https://en.wikipedia.org/wiki/Autism)

 


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