"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.

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.

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