A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts in autism in society

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

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.”

on the eve of Father’s Day in the US, here’s a tip from the dad of an autistic child across the pond in England:

beach

When you have a child on the spectrum, you get used to disapproving looks from strangers. But if people learned to be kinder and more understanding, it would benefit everyone.

ne of the most difficult things about autism is the judgment of other people. That has been my experience of having a son on the spectrum. Throughout his life, from trips to the park as a toddler to restaurant visits now as an 11-year-old, it has been the reactions of strangers that have really hurt. Sometimes Zac finds social situations very difficult. If things are noisy, if there is something he wants that he can’t have, he finds it tough to process those emotions. He may cry, he may become angry, he may have what is commonly termed “a complete meltdown”. As parents, my wife and I have developed ways to foresee and manage these situations, but if we are in a public place, or if my son is with other adults, everything becomes far more fraught and complicated. You get used to the disapproving looks. You get used to being judged.

https://www.theguardian.com/lifeandstyle/2017/jun/16/how-to-help-people-with-autism-just-be-nice

Time for a feel good post.  And one great truth about raising a child (or two) with autism is that you’re not alone.  The support you will receive from other parents, your family, the local community will help tremendously.

This article from Today is a reminder of that truth:

Things I wish I’d known about having a child with autism

http://www.today.com/series/things-i-wish-i-knew/things-i-wish-i-d-known-about-having-child-autism-t110323

sarah and micah

Nice to see Sesame Street acknowledge kids with autism with the arrival of “Julia”.   This will allow the newest of generations to get better acquainted with kids on the spectrum and what to expect.  It’s a nice development.  It might even make Elmo more palatable.  🙂

https://www.nytimes.com/2017/04/07/well/family/what-a-muppet-with-autism-means-to-my-family.html

Julia

When I read this article, I could relate in every way possible.  It’s not every family that have identical twin boys in their late teens.  And the difference in personalities between Nathan and Curtis mirrors the differences between Michael and Sean (Nathan=Michael, Curtis=Sean).

It’s a great read, especially on the cusp of Autism Awareness Day.  Enjoy:  “Out And About With Autism”

The Bickerstaff Family

The Bickerstaff Family

 

https://www.theguardian.com/tmi/2017/mar/31/out-and-about-with-autism-if-a-baby-starts-crying-we-have-to-leave

 

The most nagging fear for any autistic parent is what happens to your kids when you’re gone (or at least no longer able to care for them).   The shortage of adult housing has been well documented.  The nation’s appetite for taking care of the less fortunate is probably at an all time low.

I’m writing this as a wake up call to myself.  Over the next five years, I need to develop a plan, a realistic plan to take the boys through adulthood.  That starts with housing, but includes vocational work, a sense of purpose, as happy a life as they can possible have.

 

All I need now is a plan. housing

I was visiting my boys high school this morning for Freshman Orientation.  One concern we have is how our son Sean will handle the cafeteria situation.  For kids with autism, it can be overwhelming.  Heck, I think the lunchroom was overwhelming for must of us growing up.

Here’s a feel good story about a Florida State wide receiver who decided he wasn’t going to have one little boy at a middle school eat all by himself:

fsuhttp://nypost.com/2016/08/31/florida-state-players-incredible-gesture-will-bring-you-to-tears/

In the context of today’s times, comes an article about a police officer who helped a young boy get over his fear of the police.  As it turns out, the officer is white and the child is black, but the main takeaway is someone reaching out and being appreciated for the effort.

Mom Thanks Matawan Police Officer for Being Kind to her Autistic Son

http://patch.com/new-jersey/middletown-nj/s/ftg5f/mom-thanks-matawan-police-officer-for-being-kind-to-her-autistic-son