Saturday, February 23, 2013

Child Specialist Visit at UKM Specialist Centre

It's been a while since I had the time to continue writing in this blog. Mainly because I had a new job, which is very challenging. Travel to work at 8.00AM and arrive back home at 9.00PM, sometimes 10.00PM. Enough about me.

We managed to secure the appointment with Prof Madya Dr. Raja Juanita Raja Lope at the UKM Specialist Centre and went there on the 26th of December 2012. Her specialty is Developmental Paediatrics.

The doctor is really nice, and we are very satisfied with the diagnosis session. She had a lot of tools among them are color coded cards, toy blocks to analyze the ability to follow instructions, and picture books to see the child's imagination. She also tested motor skills by asking son to do certain movements according to her instructions.

Before engaging our son, she collected as much information as possible from us especially in family history. Son didn't take long to get comfortable in the spacious consultation room.

The session lasted a bit more than 2 hours, and the final result is that our son does not have Asperger's and he only has some of the traits of autism. In other words, mild autism. So he was categorized under PDD-NOS.
Some developmental health professionals refer to PDD-NOS as “subthreshold autism." In other words, it’s the diagnosis they use for someone who has some but not all characteristics of autism or who has relatively mild symptoms. For instance, a person may have significant autism symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restricted, repetitive behaviors.
So we are advised to get him to therapies such as occupational therapies and speech therapy. We were also instructed to get a hearing test done.

He is also officially awarded the Orang Kelainan Upaya (OKU) status (Persons with different abilities) which will enable him to get certain benefits from the Government. We are applying for this status at JKM to be able to certify his needs and hopefully get some kind of priority for therapies and treatments when necessary.

The doctor provides us with the forms to be submitted. Officially, the main diagnosis is still Autism Spectrum Disorder. I have no official source to quote, but in 2013 Asperger's will not be categorized separately and will also be a part of ASD. The doctor also mentioned this.

Are we surprised? No we are not. But it's official. We now need to train ourselves to take care of our autistic child.

As for schooling, the doctor advises us to get him into a normal school. But we've tried and it's not possible right now due to his inability to listen to instructions and react properly to social cues. We are hoping that after therapies he will improve and he can go to school.

Asked about whether siblings will help him improve, the doctor said definitely but she also warned us now that out first child is autistic, there is an 8% probability that our next child will be autistic too.

Back then, we had to think. As the time of writing, we have decided to try for his brother or sister later this year when I'm all settled down with my job issues.

The biggest issues right now would be securing funds for the therapies, and actually getting the appointment for the therapies. They are in high demand and waiting lists are actually listed as months!

Cheers,
- Abah

2 comments:

bibi yusof said...

can you share the cost of visiting this paed?

My Aspie Family said...

I tried to look, but seem to have misplaced the receipts. I remember that I thought it was affordable. Perhaps around RM150 to RM200. If I find it, I will let you know of the exact amount.

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