A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in July, 2017

and the winner and still champion is:  Genetics!

 

https://www.nytimes.com/2017/07/12/health/autism-faces-genes-brain-development.html?_r=0

The crux of the matter: what if the current mainstream assumption that people with severe autism have matching severe intellectual disabilities is our own decade’s big, bad wrongness about autism? What if Naoki’s conviction that we are mistaking communicative non-functionality for mental non-functionality is on the money?

“Fall Down 7 Times Get Up 8: a Young Man’s Voice from the Silence of Autism” by Naoki Higashida, introduced by David Mitchell and translated by Mitchell and K A Yoshida, is published by Sceptre https://www.amazon.com/Fall-Down-Times-Get-Up/dp/0812997395

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

The boys enjoy bath time.  In fact, it is a respite for all parties concerned, especially their parents.  And so, for years and years, it’s been bath time.  Over the past few years, we no longer fill the tub, we just let the water run as it becomes a comfortable stim for the boys.  Susan and I wash their hair for them, literally using a plastic cup to rinse the shampoo out of their hair.  We then ask the boys to use a washcloth as best they can.  That has kept them reasonably clean.

Shower

But this is the summer of showering!  To start, I replaced the old shower head in their bathroom with an extended arm and a gentle rain shower head.  To be fair, the old shower head was pretty crappy and only sent out a single jet of water.  This should be far less intimidating for the boys.

Of course, they now have to relearn their new routine and become much more self sufficient.  Hell, I don’t care how long they stay in there as long as they clean up and wash their hair.

They’re only about a decade delayed in being able to shower on their own, but raising autistic kids has nothing to do with staying on “normally developing” kids’ schedules.  It’s when its right for them and another step towards being self sufficient.

This article was just published in Scientific American.  It points to the great progress that scientists have made in mapping the genes that lead to autism.

It also points to the fact that the more we know, the more we don’t know.

At some point in the not too distant future, it may be possible for kids to hbig dataave a genetic correction to mitigate the affects of autism.  Probably not for another 20 years, but progress is being made.

https://www.scientificamerican.com/article/using-big-data-to-hack-autism/

“If we ever saw a self-correcting defect in two mutations in autism,” Wigler says, “I would stand up and cheer.”