Thursday, February 16, 2017

Autism Research Battle Fatigue

Mu with iPad AAC ©Kerima Çevik
It begins every February. Just after Valentine's Day, the build up of hype to Autism Month kicks off with the media blasting "breakthroughs" "new research" "new hope" for autism. We grit our teeth and manage to get through it, but the latest "breakthrough" got on my husband's last nerve. He was really angry and so was I because the pattern is an infinite loop that paves the highway to nowhere that helps our son.

It goes like this: Some minor thing is hyped in the press as if it is a medical miracle, followed by a small bit of news that changes nothing and does nothing to help our 14-year-old nonspeaking autistic son with his AAC needs, his education, his healthcare challenges or his community supports. Here's how the BIG AUTISM NEWS was headlined:

Study: Detecting Autism May Be Possible Earlier in Child's Life 

But early detection doesn't help diagnosed autistics over the age of four at all. The average lifespan of an autistic person is 16 years less than the lifespan of anyone else according to a Swedish study. Inevitably, research always focuses on birth and early intervention, then ignores the entire life that already diagnosed autistics have to live after those first four years.

Here is what the headline should have read:

Brain Scans Detect Signs of Autism in So called 'High-Risk Babies'(i.e., siblings of autistic children) Before 1st Birthday

Here is what this study, which must be replicated in order to base any sort of planning or policy on it, actually says in brief, plain language:
If a family has one autistic child and they have an infant, and that infant has a bigger brain, then that infant has an 80% chance of being autistic. Bigger brains can be checked for by MRI scans on sleeping infants.

That is it.

Whenever I hear about new research, I go to Scientific American or the peer-reviewed journal publishing the original research paper. This allows me to see what the research was actually about rather than have to wade my way through hype and skewing of research results for attention or ratings. Here's the article on the actual research paper:

Wow. I love millions of dollars in research that states the genetically obvious.

But hey, early detection means early intervention and the chance for 'making' infant siblings of autistics indistinguishable from their peers, right? Because hiding in plain sight is 'good' and means fewer resources and higher demands on children who will still be autistic, but just look and behave as if they aren't. It seems that autism research isn't about supporting autistic people and their families, it is about making society comfortable by hiding those who are autistic among those who are not. Are we now entering the "Autism: Don't ask, don't tell" era?

Tell me, how does this help my son with the accommodations he needs? How does this research aid in his primary challenge, which is being nonverbal? How does this improve his sleep cycle disorder, immune system weakness, gastrointestinal issues? This is not an autism breakthrough. This is an autism research paper in which genetic predisposition for autism was likely and success was almost inevitable.

My husband and I are tired of being perpetually annoyed at the sole emphasis on this type of research and the media's hype of it because funding that should go to improving the lives of our son and his peers is instead being disproportionally poured into detection and DNA testing. Yeah. We actually get our son is autistic. So does he. Aren't all of you tired of this, too?

We don't want research into new and improved chemical restraint in the guise of powerful hypertrophic drugs. We don't want to fund the ambition to create an autism test that works like the Down syndrome test so parents can abort their autistic babies or "CRISPR" the "autism genomes" away. Nope. I don't care how soon they could have diagnosed my son as autistic but did not. What I care about is how to help him become as autonomous as possible and how to ensure he has a safer, more accessible world to live in. I care about him not dying before his time.

We watch million of dollars go into everything but what autistic people need. No needs assessment has been done on what research autistic people and their families need that might help them right now, and each time one of these research puff pieces comes out our exasperation escalates to the point where we are now in full autism research fatigue, and just don't want to hear it. Research claiming to be "for autism" should actually benefit our autistic loved ones, not focus solely on early intervention and early diagnosis. It is past time for autism research to aim for client-centered outcomes with the active inclusion of autistic people and their families beyond use as data sources and genetic material.

We will have two more months of announcements on research "breakthroughs" "new research" and "new hope" "for" autism, not autistic people,

Caveat Emptor, buyer beware autism families. When it comes to autism research rolled out from February to April's fundraising month for autism, ask yourselves how it benefits your autistic loved one. The truth is, we are the ones asked to participate in various events to raise funding for autism research. Think about where that money will go and make your voices heard for autism research that benefits and improves the quality of life for your autistic loved ones and increases their lifespan. Then speak out and do what is necessary to drive funding to that research.

On New Autism Research
Scientific American 
Autism Starts Months before Symptoms Appear, Study Shows
Flagging children early offers the possibility of more effective treatment
NBC News
Study: Detecting Autism May Be Possible Earlier in Child's Life
On the Shortened Lifespan of Autistic People 
Why do many autistic people die before the age of 40?
On CRISPR and Targeted Genome Editing
New England BioLabs
CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology

No comments:

Post a Comment