Yes, Autism Is a Problem that Must Be Solved

Recognizing there is a problem is the first step in seeking a solution. Until this first crucial hurdle is crossed there will be no progress.

(Stock image)

By John Eckhard

It seems absurd to those of us who deal with severe autism every waking moment, and too often in our dreams as well, that there still exists in society a prevalent belief that autism is not a problem to be solved. Recognizing there is a problem is the first step in seeking a solution, for until this first crucial hurdle is crossed there will be no progress.

There is a romanticized view of autism that at times even goes so far as to say autism is an evolutionary step in our species. Instead of being viewed as a disorder to be researched and one day prevented, treated or even cured, it is too often heralded as a coveted gift that needs to be celebrated and embraced.

I am sure that most of this is attributed to the spectrum of autism being so vast that it has lost all meaning. Distinctions or nuances within this vast spectrum are frowned upon for there seems to be a desire that all autistic people fall lock step into a mantra of ‘All for one, one for all’. Again this may sound like a noble, lofty and selfless ideal but it leaves people like my son who is severely autistic without a voice and without the resources he and so many others need to simply make it through a day. A one-size-fits-all approach to autism is not only impractical, it is outright dangerous and cruel.

“A one-size-fits-all approach to autism is not only impractical, it is outright dangerous and cruel.”

Self-identity and autism seem to be intrinsically linked in the minds of some people. I have heard it said that if my son was no longer autistic he would no longer be who he is. When he was first diagnosed at the age of two this line of reasoning was very compelling for I did not want to change my precious little boy. He is now 11 and watching him struggle and suffer over this past decade I now believe with all my heart that it is precisely autism that is preventing him from being who he really is. Without the straitjacket of autism he would become his authentic self.

I believe that all people desire and want to be free. To the extent that we are prevented from being free we are prisoners to whatever is holding us captive. If you believe in God it is sin who makes us captive. In a corrupt government it is the brutal regime that makes us captive. In an intolerant society it is bigotry and hatred that makes us captive. And for my son it is severe autism that makes him a captive. 

“I have heard it said that if my son was no longer autistic he would no longer be who he is… I now believe with all my heart that it is precisely autism that is preventing him from being who he really is. Without the straitjacket of autism he would become his authentic self.”

He is powerless in so many ways to break free from the autism that holds him in its tight grip. Autism has robbed him of his ability to speak, to have autonomy over his own bodily actions, to enter into meaningful relationships, to live an independent life without 24/7 support, and to top it all off autism will even steal away so many years of his life.

This to me is not a romantic “diversity,” but rather a dismal reality that so many people live, and it is hidden for it does not fit the narrative. My son, and millions of others like him, only have one life to live and as a civilized and humane society we should be doing everything in our power to help them.

Every waking moment my son struggles to live in a world which he does not understand and is so often dangerous to him, and yet he tries with all his might. It took him months before he could navigate from the concrete patio to the grass for the transition and textural change was overwhelming to him. 

He does not know how to do something as simple as throwing up. He wants to immediately swallow his own vomit because he is scared and disoriented. My wife and I will hold his head forward and try to coax him just to let it out wherever it may land — the floor, the couch or even on us. My wife and I do everything we can to be his guides and protectors, but we need more — we need society to wake up to the nightmarish reality of the autism tsunami and respond with the urgency my son and all of us desperately need.

John Eckhard is the father of an 11 year-old son with severe autism.

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.

"I no longer have patience for toxic autism ideologies"

#AuthenticAwareness from an outspoken autism mom: “We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. “

The author’s daughter with severe autism.

By Seasons of Autism

It's 1:45 a.m. P is wide awake. There's nobody else here to take care of my daughter. Nobody out there in the community that has come to despise parents of autistic children so much is here caring for her. None of those people who say I'm not an advocate. None of those people who call me a horrible person. None of the people who claim to know her better than me are here right now. It's just us.

When you walk this journey please don't let anybody tell you what's best for your children. Especially don't let some random person on the internet who claims they know your child because they claim they share a diagnosis. Sometimes I have tried to just stay out of the fights or ignore it. But the other day I saw just how toxic the rhetoric has become. And over the past couple months my view has changed. I can't sit by as an advocate and allow parents to be treated this way. As caregivers we don't have it easy. This is a hard path. The reality for some of us is that our children will grow up and become adults who will continue to need lifelong care. Frankly I just no longer have the patience for the toxic ideologies being pushed.

My daughter is autistic, it is not her identity. It's her diagnosis. Autism and autism alone is my daughter's disability. Due to her autism she will profoundly be impacted her entire life. If you are autistic and have gone on to have children and live a life outside of a caregivers careful watch that is wonderful, but you aren't like my daughter. There's a reason why autism is a spectrum. Call it severity. Call it support needs. Potato, potato. Same difference.

I'm tired you guys. I'm so dang tired.

Being a mother to P has helped me to understand that autism is different in different people. For us, it's changed our lives. As I sit here listening to my beautiful teen script to herself and watch young children shows I'm acutely aware that we are different from those who rail so heavily against parents instead of supporting them. We are different because we understand the difference. So my page is a place to hear people, to understand that severe autism still exists, although in hushed tones. We wouldn't want to offend those who don't understand it. Don't recognize it because it doesn't fit their version of what autism looks like.

I am so darn tired.

So we won't bow. We won't break under the weight of pressure to conform or be canceled. We won't bend to the mob. I refuse to stop advocating for autistic children and their caregivers. I refuse to remain silent out of fear. I refuse to give up and hide in the shadows where they prefer children like mine stay. Voices who certainly can't speak for themselves so if you silence the parents then you've silenced every story of those who cannot tell their own story. Scary thought, isn't it? If we don't speak up the meaning of autism as a diagnosis of a disability will someday change. I've been saying that for quite a few years now. Never did I fully believe it could happen, now I'm not so sure.

We have to be their voice. We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. Please understand me when I say I have wonderful autistic friends who do understand severity levels exist. They do understand the difference. They understand that stories like P's deserve to be heard, just like their own. So please don't be fearful of all autistic adults because I have wonderful friends who have been great help to me and my family. Friends across oceans who I know I could call on at anytime. Friends who also have had their voices squashed because they dared to disagree with the cult like mentality that has formed in some parts of the autism community. Just be careful who you allow in your circle.

“Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital.”

I believe there's hope, but stopping the misinformation is vital. Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital. When someone is saying something is abuse that needs to be looked at through a clear lens. Not a murky one where some people had a bad experience twenty years ago. The world of psychology is about learning and understanding. And it'll never be without some bad apples who probably shouldn't be therapists. But with any profession some people don't belong there. That doesn't mean you toss out all of it.

After all that has been said to me, some of the horrible things, I'm the one that's here for P. These people no longer deserve my respect, or even a response from me. They are no longer allowed to take my energy or my peace. Someday I'll stand in front of my Lord and Savior and I don't believe He'll shame me for saying parents can decide what therapies their child should have. I believe that beautiful day where I finally no longer suffer from chronic pain, where I finally no longer feel tired, or scared, or overwhelmed by anxiety. I believe that day He'll say well done, good and faithful servant. I don't believe we are here by accident. P was no mistake. P is beautifully and wonderfully made. And her home, her peace, her comfort is church. There is a reason she's so at peace there. It's reassuring to me because I know she has a connection to our Creator I probably won't ever understand.

So this is us. Take it or leave it. Seriously. I used to never ban people, and I always tried talking things out. But I'll no longer tolerate hateful people who spew ridiculous garbage. So if you've hung with me I think it's clear my mental health is suffering due to this mess. It has been rough. I have no tolerance for foolishness.

“Take us or leave us, this is our autism journey.”

This is our life. Sometimes it's extremely difficult. Other times are full of great victories. One thing is for sure Autism alone changed my daughter's life. As well as everyone else in our family. And while we've learned to appreciate the beauty, we also accept the emotional drain from the hard parts. And unfortunately for me, even physical pain is part of that equation. Take us or leave us, this is our autism journey.

Thanks for listening. It's 2:45 a.m. now and P is still not back in bed. It's going to be a long night.

#autismjourney #youcansitwithus #norestfortheweary #mentalhealthawareness

Seasons of Autism is the blog of an autism mom based in Nebraska. You can find Seasons of Autism here.

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.

Lancet Report: Momentum builds toward breaking up the autism spectrum

Dear NCSA community, 

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD." 

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives. 

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more

Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.

By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum

Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in

Have an opinion about breaking up the autism spectrum? Join the conversation on NCSA's very active Facebook page.

See NCSA's position statement on the need for categorical recognition of severe autism in the DSM.

The Sia Shaming Spectacle Is a Tragedy for the Arts and the Autism Community

By Jill Escher

Humans have a long tradition of public shaming spectacles. Think of the public hanging of criminals, the burning of heretics at the stake, the guillotine-ing of aristocrats, the stoning of women accused of adultery.

But in our modern era the spectacles are more likely to take place online by outraged (or, more likely, mildly ruffled and anonymous) mobs who gleefully dogpile on hapless victims after the latest e-fatwa is announced by their leaders.

It only takes about 30 seconds of your time, provides a rush of sanctimonious satisfaction, and, best of all, it’s free! Can you say, “Cheap Thrills”?

Yes, the singer/filmmaker Sia is the latest casualty to succumb after committing a truly TERRIBLE SIN … an unforgiveable transgression of the Book of Neurodiversity … she cast an actor in the role of a girl with severe autism in her new film “Music” … and that actor was only pretending to be that character! OMG, shut the door! Daniel Day Lewis you are cancelled! Eddie Redmayne you too are cancelled! Dustin Hoffman, consider yourself cancelled! Every actor who has ever played someone beset by a condition they didn’t actually have, enjoy the gruel in Cancel Jail! (Goodbye Leonardo DiCaprio, and oh no, also Russell Crowe, I am sobbing….)

The attack on Sia by a vocal, unhinged minority is so preposterous that one would normally shrug it off with a “Oh, there go those-people-who-have-so-much-time-on-their-hands-they-attack-a-stupid-puzzle-piece,” but in reality this is much worse. This time, evil has triumphed.

Evil because the crusade to crucify Sia sends a diabolical message to every person in the performing arts: depict severe autism in your movie/film/play at your own peril. If you don’t do it exactly the way we want, you are toast. Transgress the Book of Neurodiversity in even the slightest manner and you will be pilloried, putting at risk months and years of creative effort and financial investment. Your reputation will be stained. Your artistic freedom squashed.

In other words, what artist would dare to tread on the subject matter of severe autism when a tidal wave of mindless insta-denunciation awaits them, at the merest stroke of a self-righteous Tweet?

For that’s what’s at stake here — banishment of depictions of severe autism. As the autistic writer Lucy Kross Wallace observed:

“It is one thing to suggest that casting actors with disabilities might produce more compelling performances, but it is quite another to foist these requirements upon every artist. In calling for Music’s cancellation, neurodiversity advocates cross the boundary from exercising their own liberty to infringing on that of others, including Sia’s autistic collaborators.”

What a tragedy for the autism community. Children with severe forms of autism have become a vast proportion of the population, about 1 to 1.5% of all children! Clearly they deserve more and more representation — in the news, on film, on TV, on stage, in print, everywhere. But the hair-trigger threat of Neuro-scorn will surely help keep severe autism firmly in its dark corner, orphaned, abandoned from the broader autism discourse, despite the monumental societal urgency.

As the mom of a nonverbal autistic teenage girl who seems, based on the trailer (I haven’t seen the film, it’s not yet out in the US, and I should add that for all I know I won’t like the film at all), very much like the lead character Music. How fabulous that a filmmaker chose to make a movie with a character like my darling Sophie, it’s happy dance time! People like Sophie are so dreadfully hidden from public view. So my feeling was, hurray for Sia for shining an oh-so-rare light!

But — according to the mob but also Autism Speaks, which tweeted in support of the mob — no happy dancing for me, because someone like my dear Sophie was not cast in the lead role.

Okaaaaaayyyy… say what? Let me tell you what would have happened if Sia had cast Sophie as Music. She would have wandered off the set, flung off her costume and headphones, flipped out at the lights and noise, fell asleep at the late hours, and failed at following a single directorial direction. In other words, disaster.

This point was conceded by the mob, which instead took the position that Sia should have cast a girl with high-functioning autism who had the cognitive-functional capacity to perform in the role. Sure, okay, I saw the lovely film “Keep the Change,” which, for example, cast actors with high-functioning autism in the lead roles, and to my mind it was triumphant.

But, really, we can acknowledge that actors with autism or other disabilities can do great work and should be among those considered for roles of all kinds without the disproportionate hysterics of demanding that every single autism character be played only by those who pass some sort of bizarre spectrum purity test? Or should a zealous mini-mob wield veto power because through some loony logic that I have been unable to fathom, they own the whole turf of “autism”?

Yesterday I am told Sia took down her Twitter account after enduring months of attacks. I am told she apologized to the mob (for what, I’m not sure).

We are all losers here. The autism community. Artists. Writers. Actors. The public. Creative expression. Free speech. Disability awareness. And of course Sia herself.

It cost exactly nothing for vindictive and self-absorbed Sia shamers to cast a dark shadow on her heartfelt endeavor over a mere triviality. This is not how reasonable people behave. Reasonable people may write a negative film review (have at it!) but they don’t launch a cancel crusade over something as innocuous as casting choices (right, Daniel, Eddie, Dustin, Leonardo, and Russell? or shall we demand your penance too?).

The frightening bottom line here, to borrow the words of a neurodiversity leader, is that Bullying Works.

Jill Escher is President of the National Council on Severe Autism.

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.