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Best of: Alike but Different

Empty giftNote: Cathy is enjoying a well deserved vacation with her family. She thought you might enjoy this best of from Spring, 2017.

By Cathy Jameson

Some people try to tell us that our children’s diagnosis is a gift.  They think it’s something we should treasure.  Forgetting just how very complex it is, some people try to simplify it.  That happens when they say that autism isn’t much more than a different way of thinking. 

If only that were really the case.

For many, including for my child, autism is medical.  It’s loss of acquired skills.  It’s the onset of seizures.  It’s problems with the gastrointestinal tract.  It’s the inability to speak.  It’s cognitive deficits and lack of independence.  That kind of autism exists, but mainstream news tends to show only bright and shiny ‘fee good’ autism stories.  I love to see those heart-warming stories, but rarely do I get to see ones that represent my son. 

Thinking that it may just be a US trend to highlight only happier tales, I looked on some international Parents who Creatednews pages to see what sort of autism stories they were sharing.  While scrolling through a few of the featured stories on the BBC last week, I came across a few ‘feel good’ piece.  The title of one caught my eye.  The fact that it was medical in nature made me even more curious.  The story wasn’t about autism, but I had to find out more. 

I much prefer to read my news than watch it, but the accompanying clip was too good to pass up.

Imagine.  A devastating diagnosis x 2!  With nowhere to turn.  With no one able to help.  The parents research on their own.  Yes, research.  It proves promising.  It has the potential to help their children.  The parents find a team, a TEAM of medical providers to help them.  The research, the hard work, the never quit attitude and the unique drug that the parents create yields results – good ones!  The girls are improving.  They are gaining skills.  They have a better quality of life.  The family hasn’t found a cure…yet, but everything these parents have done is promising.  With the potential to help other children.  With the desire to reach other parents.  With love, determination and support, the parents have moved mountains.  Others recognize that.  They reach out to the parents.  The parents make themselves available.  How very exciting! 

So why did I feel a twinge of jealousy as the news story ended?

How many of us have done the exact same thing this pro-active couple did?  We’ve done the same level of research.  We’ve done the same reaching out to others.  We’ve made the same requests to pull the medical community in.  We’ve done everything almost exactly the same.  And yet if we bring up that our child’s diagnosis, we’re told to merely embrace it. 

Our kids are sick. 

They are in pain. 

They need medical attention. 

It would be nice if our children’s disorder, and how it came to be (vaccines), was given the same kind of positive attention this beautiful family was given.  But instead of holding our hand and guiding us, we’re rejected.  We’re ridiculed.  We’re scoffed, pushed away, and ignored.  Some parents are even forcibly dismissed.  Autism may not be deemed as life-threatening as the twins’ diagnosis is.  But our children, just like those gorgeous children, also deserve a chance – a chance to receive appropriate care, to be treated with respect, and to simply shine in a ‘feel good’ news story designed to tug on the heartstrings of the public. 

We may not have a platform in the mainstream news, but our families have a platform here and on other websites similar to Age of Autism.  But imagine if our stories were sought after and broadcasted like the twins’ story was.  Even if only one of our stories was aired on the nightly news, imagine what sort of difference it could make.  I don’t see that happening anytime soon.  The public’s ready to embrace all that autism includes.  The seizures.  The self-injurious behaviors.  The incontinence.  The unintelligible or non-existent speech.  If it’s still too much for some medical providers and educators and law makers to handle, how can we ask the general public to process any of it?  We can’t.  

So what do we do? 

We continue to tell our stories.  We tell them here and to people we meet.  We tell them until we’ve told them to everyone. 

While I’m doing that, I’ll be keeping my eye out for news stories that hint that autism is medical.  I’ll hope to see upbeat stories about severely affected kids like mine, but since I know I won’t find too many of those just yet, I’ll be happy to see more stories like the twins’ story.  It’s an important piece to share, and I do love seeing those kinds of news clips at the end of a long, trying day. 

At the end of the day, I want to see something hopeful, happy, and inspiring.  Even with the small twinge of jealousy that fell over me when the clip ended, I also felt hopeful, happy and inspired as well.  I saw pieces of myself in that video.  I saw pieces of Ronan and of our entire family, too.  The hard work.  The dedication.  The commitment.  That is us.  That is us every single minute of every single day.  I wish the family that was featured in the BBC all the best.  Truly.  Because my goal is exactly theirs – to enhance my child’s quality of life, to bring his health back, and to help other parents in need along the way.

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

Pogo

The video of these twins which mentions their hearing problems, brings to mind the importance to perceiver with language engagement and training before the age of five, even if no progress appears at he time. There is a critical window in early childhood for them to develop Prefrontal Synthesis (PFS). Without this they will never develop any language skills — even if, their autism improves later. Leaving them with a very low IQ (<70). The following explains this better than I can.

"To understand the importance of PFS, consider these two sentences: "A dog bit my friend" and "My friend bit a dog." It is impossible to distinguish the difference in meaning using words or grammar alone, since both words and grammatical structure are identical in these two sentences. Understanding the difference in meaning and appreciating the misfortune of the 1st sentence and the humor of the 2nd sentence depends on the listener's ability to juxtapose the two mental objects: the friend and the dog. Only after the PFC forms the two different images in front of the mind's eye, are we able to understand the difference between the two sentences. Similarly, nested explanations, such as "a snake on the boulder to the left of the tall tree that is behind the hill," force listeners to use PFS to combine objects (a snake, the boulder, the tree, and the hill) into a novel scene. Flexible object combination and nesting (otherwise known as recursion) are characteristic features of all human languages”.

The full article here:
https://phys.org/news/2019-08-recursive-language-modern-simultaneously-years.html

And how it applies to ASD:
Children shape their learning environment—the case of language acquisition in children with ASD
https://medicalxpress.com/news/2019-01-children-environmentthe-case-language-acquisition.html

Finally. I found these depressing statistics:
31% per year of children become non verbal and thus develop lifelong intellectual disability.
Cost: $ ~10M lifetime for support/assisted living per child.
This equates to $ 200B/yr for Medicaid plus $ 200B/yr due to non-productivity
https://app.box.com/s/ndnteezm8d4cswvia1ptwkc1t48x80j5

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