In Crowded AutismLand, One Issue Truly Stands Out

#AuthenticAwareness means we understand that not all autism problems are created equal

By Jill Escher

Every day I feel fairly bombarded by media, messages, and research articles about The Latest Terrible Thing in autism. Last week I heard about how terrible it is that parents speak out about their children’s disabilities how terrible it is to use the term “special needs,” the terrible terrible puzzle piece (of course!), and terribleness of autism studies not conducted by “autistic researchers.”

I admit my jealously. How I yearn for the luxury of such superficial moral quandaries.

Here’s what’s truly terrible. A muscular nonverbal 23 year-old autistic man who spends his days ripping and throwing things, and can’t leave the house without at least two strong people safeguarding him. A young autistic woman who ingests toys, soap, rocks, and even light bulbs. An 8 year-old autistic boy who has been kicked out of every school program available in his state due to his aggression. A bedroom smeared with poop. A mother who needs to pad the walls of her house because of her adult son’s history of pummeling sheetrock. A family that spends $80,000 a year that they don’t have on therapies, in-home support and home repairs. A family on the brink of sanity due to acute sleep deprivation. A severely autistic boy locked in the ER, in a helmet and arm limiters to prevent self-injury, with nowhere to go. A family that cannot take their daughter anywhere owing to her constant screaming and history of elopement. A mother who regularly turns to 911 calls to save her when attacked by her 280-pound adult son.

These are the true priority issues in autism. What the professionals call “severe, challenging behaviors,” or “externalizing behaviors.” These are things that ruin lives, break bones and homes, and impose astronomical financial costs and families, schools and care systems. No amount of wishful thinking about neurodiversity, inclusion or “autism acceptance” can make even the slightest dent in these overwhelming, calamitous problems that have tragically become commonplace across the U.S.

The number one job for autism research and practice today must be the reduction of severe behaviors. Compared to this, everything else strikes me as a luxury.

I have two children with profound “Level 3” autism, one who has severe behaviors, and one who does not. Their daily functional realities are so dramatically different that it seem preposterous they have the same exact diagnosis. I would give anything to transform my son’s version of severe autism into my daughter’s.

My son’s behaviors are so severe that not a single agency in our region will accept him as a client. My daughter’s behaviors are so mellow that she can go anywhere and do almost anything with minimal assistance, even a fancy fundraising gala, or skiing challenging slopes. My son cannot attend any family functions; my daughter enjoys all of them. The financial bill to care for my son is many times that for my daughter. My son is on five medications to help address his behaviors, my daughter is on none.

While the idea of curing autism is out of the question (you can’t cure a disorder arising from dysfunction of early brain development), finding ways to mitigate the severe behaviors may be in our grasp. At this time we see practitioners and parents throwing darts at the problem using any tools that might help, including behavioral therapy, a wide array of medications, sensory therapy, cannabis products, and in rare cases electroconvulsive therapy. Occasionally an underlying medical problem like a rotten tooth, is found to be at the root of the behaviors. Typically today’s therapies help somewhat but often they lose effectiveness or have unwanted side effects. Sometimes they are too expensive, or families can’t find a doctor to treat their children. Waitlists at the best clinics can be more than a year long.

We must do better. We need a Manhattan Project of Severe Behavior in Autism to identify better therapeutics for these patients so they can have a semblance of quality of life and to reduce the enormous toll on families, care providers, and systems. How truly terrible that we see so little research on severe autism, the area of greatest need.

But a bit of good news. At the INSAR conference (International Society for Autism Research) next month, NCSA will be working to intensify research in this area. We are co-sponsoring a special interest group, Reducing Severe and Challenging Behaviors in Profound Autism, with many leaders in the field. We see this as a starting point to make tangible differences in the lives of those with profound autism. Nothing in autism is more important.

Jill Escher is president of NCSA.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

#AuthenticAction: Profound Autism at the Dentist

How ABA enabled my son to transform into a cooperative patient and partner in his own health

 

(Stock image)

By Eric Jager

As the parent of a profoundly disabled autistic young adult, I’ve heard lots of perspectives on the challenges and health risks associated with autism. This has meant learning about multiple therapies and determining how and when to use them to reduce the trauma caused by his autism and to increase his ability to function independently. My son is not unique in that the dentist’s office was a tremendous source of his trauma.

But thanks to a program developed and implemented by his ABA therapist and a dental hygienist who utilized methods grounded ABA, he is now able to calmly tolerate a professional cleaning, an outcome which I previously thought was not possible when we began the process years ago.

“Thanks to a program developed and implemented by his ABA therapist and a dental hygienist, he is now able to calmly tolerate a professional cleaning, an outcome which I previously thought was not possible.”

MJ, who is non-verbal and intellectually disabled, has had exposure to ABA (as well as speech and occupational therapy) in some form for 17 years and I have been reading about both practical uses and critiques of the therapy for almost as long. Over the years, I have seen a shift in the goals suggested by some ABA therapists and insurance companies. For example, extinguishing harmless “socially stigmatizing behaviors” like hand flapping has been less of a focus. Our therapists, with our active input, have had a more intense focus on increasing self-help skills, functioning more independently in the community, and tolerating unpleasant but necessary experiences including a visit to the dentist’s office.

MJ’s trips to the dentist were horrible when he was younger. He didn’t understand why he was there and he resisted opening his mouth. We found it very difficult to communicate the necessity of the experience which he clearly found to be a horrific sensory assault. He would frequently kick and scream and refuse to sit at all. His original dentist wanted to use something called a papoose to keep him still. This is a board that the child is placed on forcibly, if necessary, which binds his hands and legs in place. It reminded me of a straitjacket and we wouldn’t let him use it. As a parent, it was agonizing to watch a dentist use force to keep his mouth open. I can’t begin to imagine how traumatic this must have been for MJ.

This is when we asked our home-based ABA therapists to help. They used a common ABA procedure called task analysis which involves breaking down the process of acquiring a new skill or habit by dividing it into smaller, manageable tasks. The plan involved exposing MJ to various dental tools including the mirror, probe and toothbrush in the comfort of his own home. They worked with him to open his mouth for increasing lengths of time and simulated cleaning his teeth. He was rewarded with verbal praise (“Great job, MJ!”) each time he met one of the established sub-goals.

Next, the BCBA and team leader accompanied us to the dentist’s office and again used verbal praise to reinforce his success in sitting in the chair and opening his mouth, even for a very short time. He made some progress but ultimately, as MJ became bigger and stronger and remained generally uncooperative, this dentist said that the only way that he would be able to effectively clean his teeth would be in a hospital under anesthesia.

“It’s very rewarding to see him now, at 20 years old, finally sitting calmly in the chair for an entire 30-minute appointment. It was crucial for the team to remain patient and focused on the goal of reducing our son’s trauma.”

We found another pediatric dentist with a hygienist who was using the same methodology (explaining every step of the process to him, requesting that he open mouth for just a few seconds at a time and then rewarding him with a drink of water). Although, he is non-verbal it is clear that he likes this hygienist and is much less stressed by the dental visits. Over the course of several years at this practice he has shown slow but significant progress in tolerating the visits.

It’s very rewarding to see him now, at 20 years old, finally sitting calmly in the chair for an entire 30-minute appointment. It was crucial for the team to remain patient and focused on the goal of reducing our son’s trauma. The approach, while not quick or easy, has helped him to maintain his physical health and well-being.

Eric Jager is the parent of a young adult with autism. He writes about autism parenting and develops workshops for parents, educators, employers and individuals with disabilities.


 Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

 

It's April! Time to "Celebrate" Autism?

Letter from the President

It's April! Time to "Celebrate" Autism?

Dear friends,

It's April, so that must mean it's Autism Month, no, World Autism Awareness Day, er, maybe Autism Awareness Month, or perhaps Autism Acceptance Month. Or as we at NCSA prefer to call it, Autism Action Month.

Whatever your preference, while we certainly celebrate and cherish our children (like my nonverbal autistic daughter Sophie, pictured with me here), we do not see autism — an increasingly prevalent, serious neurodevelopmental disorder — as something to celebrate.

When ever more American children cannot talk, and cannot function at grade level, is that something to celebrate?

When a growing percentage of young adults cannot care for themselves and require expensive and intensive 24/7 supervision, is that something to celebrate?

When 1 in 12 boys in a populous New Jersey county have a diagnosis of autism, is that something to celebrate?

When devoted parents are routinely berated online by ideological activists, is that something to celebrate?

After spending billions on research and still not finding causes of autism, except in a fraction of cases, is that something to celebrate?

When our "disability rights" leaders are laser-focused on dismantling options that serve the most severely disabled, is that something to celebrate?

Amidst all the festivities, events and news coverage, never forget the bleak reality simmering underneath the pretty pictures. Our system is failing and families are terrified about the future of their loved ones with autism.

For this we have no magic wand, but we do know one thing: working together we can raise #AuthenticAwareness, and fight for a better future. This is the essence of #AutismAction at NCSA. Honest appraisal of facts. Meaningful research. Realistic policy. Read below about the NCSA Initiatives — and think about how you might take part this April. Sometimes it's as easy as a single click.

Wishing us all a month of #AuthenticAwareness and #AutismAction,

Jill Escher
President