#AutismAction: Why Frank owns no pajamas

A sister discusses picking your battles and finding creative solutions

By Veronica Zielinski

The thing that has helped my 21 year-old brother the most is rethinking how things “should” happen.

Every morning was a struggle as we tried to get him dressed and out the door. One day (at the onset of puberty, when his behaviors peaked), we realized that pajamas are a made-up rule. Frank didn’t have to take a bath in the evening, struggle with us to get a pajama set on, and wake up in the morning to struggle into another new set of clothes. Why not give him his beloved evening bubble bath and then dress him in the comfy athletic pants and T-shirts he wears everyday? He’s a little wrinkled in the morning, but that’s a small price to pay for less stressful mornings and fewer behaviors.

Frank also hates putting shoes on. We have tried every style, every brand, every color. No dice. Now, we can make it work in spring and summer, but during Cleveland winters...he’s gotta wear something. I bought slip-on water shoes with rubber soles and put memory foam inside. He thinks they’re comfy socks. And they offer at least a little more protection against rain or rocks or whatever may cross his path. And I’m not afraid of scooping him up like a baby and carrying him across rough terrain. The bright side of “failure to thrive” is that I can still lift him at age 21 since he weighs all of 90 pounds.

But the biggest behavior trigger by far is diaper changing.

Frank has been in diapers his whole life and probably will continue to be. He hates getting changed but he also is very susceptible to diaper rash, which obviously is uncomfortable and triggers—you guessed it— more behaviors. How we get through that is the age-old art of distraction. We don’t change Frank in the bathroom. He doesn’t sit on the toilet or lay on a changing mat, and hasn’t sone so since about age 4. The kid actually never stops moving...it’s part stim, part de-escalation. He is constantly on his feet and wandering around. So...we change Frank exactly where he happens to be at that moment—standing at the kitchen counter (where he also eats his meals, because, remember, he won’t sit, kneeling in front of his CD player, or pacing in front of the window (for that one we just pray that the neighbors aren’t home.) We change him standing up in a span of about seven seconds because any longer than that will get us a swat on the head. If there was a autism talent competition I would absolutely win “best diaper change while standing and moving on a 21-year-old man who is as tall as me.” Is it appropriate or hygienic or the ‘right way’? No, but it gets us through with minimal blood and tears and that’s a win in my book.

In addition to the rarity of standing or sitting or laying in one place unless he is asleep, Frank also won’t let us brush his teeth while he’s awake. Ditto with nail cutting, shaving, and haircutting. So...I wait for him to go to bed, enter a REM cycle, and then I sneak into his room with a toothbrush and scissors and any other equipment needed. Is it ideal? No. Does he swallow the pea-sized amount of toothpaste that you’re supposed to spit out? Yes. Is his pillowcase slightly damp and minty-fresh? You bet! But before we tried this middle-of-the-night oral hygiene, he went months without brushing. Gross, I know. That coupled with seizure meds that are infamously cruel to the gums gave us a lot of hassles over the years. With nighttime brushing, Frank has had a perfect smile for almost 2 years now! And he has a fresh haircut and shave anytime he spend the night laying in an ideal position.

Where do we do all that nocturnal grooming? Well, it’s not in Frank’s bedroom. Many years ago Frank realized that his twin-size bed was not the best bed in the house. The best one was a king size memory-foam mattress that happened to be in the master bedroom. So Frank began to detour on the way to his room and crawl into the master bedroom to sleep in the best bed. He also found that sleeping in the square middle of the mattress, stretched out in all directions, means that he got to sleep all by himself! So that’s why everyone else sleeps in the tiny surrounding rooms and Frank uses the master suite. It’s rather indicative of who runs the household, honestly.

I guess the moral of our story is...do what you gotta do! Think outside the box. If you’re struggling over something with your kid, think “why do they need this? Can we skip it? If not, how can we make it more comfortable for them?” It’s helped us realize that there are lots of ways to accomplish the everyday battle called life.

Veronica Zielinski is the sister of a young man with autism. She lives in Cleveland, Ohio.

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.

#AutismAction: Stopping Aggression and Self-Injury After All Else Failed

Thanks to ECT, “Jonah is no longer is violent with other people — which is the only reason he is still able to live at home”

By Amy Lutz

I can’t tell you how many times I have read — on the NCSA blog or in the numerous Facebook groups I belong to for parents of severely autistic children — the most heartbreaking accounts of autistic kids attacking their parents or pounding themselves in the face and thought, That kid really needs some ECT.

My son Jonah, now 22, used to be one of those kids, and I used to be one of those moms – bitten, bruised, and terrified that one day Jonah would cause a permanent, serious injury to himself or someone else. Starting at age six, we tried countless medications and behavioral interventions to try to control his violent rages but nothing worked – not even an almost year-long hospitalization. We were staring down the barrel of a long-term residential placement when we decided to try an old intervention that had recently been successfully used on this new population: electroconvulsive therapy (ECT). 

The clinicians who treat autistic kids with the highest levels of aggression and self-injury generally agree that these behaviors are not “part of the autism,” as parents may have been told, but are often caused by co-morbid affective or catatonic disorders that can be treated the same way they would be in the neurotypical population: with medication, and, if that fails (as it did for us), ECT. Figuring out whether your child’s behaviors are operant (i.e., environmentally triggered) or automatic (internally driven) is an essential first step to resolving them, and may require a functional behavior assessment (FBA).

ECT has been highly stigmatized, particularly because of its portrayal as a form of torture in movies like One Flew Over the Cuckoo’s Nest. But ECT is not aversive — it is done under general anesthesia, and muscle relaxants are administered so there is very little movement. There are over 15,000 citations on PubMed documenting the safety and efficacy of ECT; about 100,000 Americans get it every year. The most common side effects are nausea and headache, although Jonah does not seem to be bothered by these.

When we decided to celebrate Autism Action month this April, I knew immediately that I would write about ECT. Jonah went from attacking us, often multiple times a day, to not attacking us AT ALL. He still gets agitated sometimes, as we all do, and sometimes he expresses that agitation by biting his hand — we’re still trying to teach him a substitute behavior for that. But he no longer is violent with other people — which is the only reason he is still able to live at home, go to the day program he loves, and enjoy his favorite community outings to Costco and Wendy’s. I am, if anything, understating the case when I say that ECT has been transformative, for Jonah and for our entire family.

If you are interested in learning more about the use of ECT to treat extreme aggression and/or self-injury in autistic individuals, check these out:

• My book: Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, by Amy Lutz

• This article in the Atlantic, How Shock Therapy Is Saving Some Children with Autism

• This 24-min BBC documentary, on YouTube, which features Jonah and an autistic young woman, and in which you can see what an actual treatment looks like.

 Amy Lutz is Vice 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.

#AutismAction: We Must Prepare a Trained Workforce for the Onslaught of Severe Autism

By Tonya L. Williams

Our severely autistic loved ones are growing in number and here to stay, and we must prepare the caregivers to be qualified, caring and knowledgeable. No more excuses. No more ignoring our loved ones. 

We all should be writing our legislators, the White House, and state lawmakers.  We need new laws to prepare our system, and workforce, to deal with severe autism.   

Two key problems are the lack of training and lack of supervision.

Did you know some states allow people to operate homes that have never had a fingerprint from FBI or state background check, or verify the applications to see if the information is true or not? One state’s Department of Developmental Disabilities has been allowing group homes to open up based on applications stating that they have qualified staff who know how to work with autistic individuals, without any actual fact checking. Basically, they allow almost anyone off the street to take care of our nonverbal, limited speech loved ones. 

And where is the training? The certificate programs? The licensing? There needs to be training for severe autism that should be months long before one could earn a certificate, and it should be updated every two years. They need to learn how to handle aggressive meltdowns, property destruction, self injury and injury to others. All states should have the same curriculum, that way everyone would be educated and prepared for the individuals with severe autism. All accredited community, state, and university colleges should have this as a continuing educational class or an allied health class. Also, the EMS, Red Cross, FEMA, and all hospitals including the security guards should offer this same training.  

Taking care of our adults with severe autism is a serious job — we went through a couple of homes that couldn’t handle my son. And it requires serious supervision. Some states offer almost no supervision of group homes and other programs serving the severely disabled. During Covid19 the Coordination of Community Services (CCS) sometimes stopped visiting their clients altogether. Instead they would talk to the directors of the group home and go by the word of what these people tell them about their clients’ well being. The client could be dead for all the CCS knows. I sometimes think my son would have been dead if I didn’t check on him through FaceTime or visited him. There should be a mandatory law that all DDA must insure that all  group homes and CCS shall have a way to Facetime, Skype, Zoom, etc. their clients.

We must not let our type of autism get brushed aside like a taboo that no one wants to talk about. There must be laws to ensure not only that individuals with severe autism get the help needed from trained, prepared, qualified staff but also access to housing! We need to be creative. For example, how about housing built near colleges so students could get experience working with this type of autism? Students majoring in nursing, special education, clinicians, social work, etc. can get hands-on training to become heroes for our loved ones.

Yes money also plays a factor in the quality of care. I think that when all states make a across-the-board curriculum on the fundamentals of severe autism care, it would make a huge difference. Think about the possibilities — having qualified supervisors, program managers and personnel will make the greatest difference in our children’s lives. 

Tonya L. Williams is the mother of a son with severe autism. She lives in Maryland.

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.

#AutismAction: How a photograph ended a stalemate with my severely autistic son

Picture this: A mother uses visual cues to cope with her son’s extreme rigidity

By Robin LaVoie

When my 21-year-old son wakes each morning, he comes out of his attached apartment into the main living room and kitchen of our house and sets things to his liking.

He resets the dog’s dish on its mat, adjusts the handle on the coffee pot, fidgets with the spoon in its rest, opens the fridge to confirm front-facing condiments, and checks the pantry for any similarly lax boxes and jars.

He straightens the dish rag at the sink and the towel hanging on the dishwasher, moves the faucet, shifts the soap dispenser, paper towels, and can opener.

He tucks in any unkempt chairs at the dining room table, flips the lock on the sliding door, returns wayward remote controls to their drawer, arranges pillows, clicks (or unclicks) pens.

In other words, he touches anything that might have moved since he went to bed the night before.

This pattern is repeated throughout the day, as he follows our movements in every room in the house. He has judged our habits of “mis-arranging” items faulty for many years, but his monitoring seems to have become more vigilant during this pandemic-isolation.

I know that this “fixing” behavior might help to calm his restless nerves, but it can be the opposite of calming for his housemates – we do not always agree on how things should be arranged, and it can be exhausting to live under his supervision.

In recent weeks, he and I got into a tussle over the proper placement of the toilet paper stand in the hall bathroom. He never personally uses this bathroom, but he still has opinions about how it should look.

Every time I used that bathroom, I found the free-standing toilet paper holder moved to a position that made it unusable from my, um, position. So, I would move it back.

And every time my son wandered into that bathroom during his house-fixing rounds, he found the toilet paper moved from where he last left it, so he would adjust it, probably grumbling under his breath about why he has to correct this all the time.

He and I are pretty much grumbling about each other all day. Not always under our breath.

None of my creative lectures or silly demonstrations of sitting on the toilet and grasping for the out-of-reach roll could dissuade him from his mission. My “Do NOT touch” sign did not work – he was probably equally frustrated that I was not following my own rules.

Of course, this TP tiff and similar arguments around our house are minor annoyances in the grand scheme of things, but when you’re home together all the time, repeating these cycles several times a day? Something had to be fixed.

I unearthed a clue to breaking our stand-off from two presenters at a virtual autism conference*. One of the strategies discussed – to support those who struggle with low executive functioning skills or high anxiety – is to literally give them a picture of what “done” looks like. Asking a kid to clean her room? Show her actual pictures of her room, Messy vs. Clean. Need him to get ready for school? Teach him to match himself to a photo of a clean, dressed, backpack-on, shoes-tied boy standing (and smiling!) by the car.

Visual cues always work well with my guy, so I decided to harness this picture-perfect idea in the bathroom.

First, I taped a photo on the wall behind the toilet, showing the toilet stand in its preferred (to me) position. A strange decorating choice, I know.

Then, the next time I caught my son in the process of moving that TP, I showed him the picture and moved the toilet paper stand to match. This is how the bathroom is supposed to look.

I was doubtful that this could resolve our fierce TP feud, at least not without several weeks of reminders and modeling.

But from the moment I showed him that magical photo – although he still monitors that bathroom regularly – his need to move that TP holder has disappeared. I no longer have issues reaching the tissues!

Now, I know that this solution is still encouraging rigidity, just a type that is better aligned with my own.

And I don’t know how long these photos need to stay up in order to remap what “fixed” looks like to him.

But for now, it’s a fix that gives us one less thing to grumble about!

Picture me smiling.

* See my inspiration for this and other ideas from Sarah Ward (https://efpractice.com) and Jessica Minahan (www.jessicaminahan.com)

You can find Robin LaVoie at itslikethis.substack.com/welcome

Hell no, I will not #CelebrateDifferences this April

A mom rages at the idea of Autism Acceptance Month: “It is REJECTION of people like my son”!

By Juana C

I keep receiving these emails…. April is no longer autism awareness month but now the month to #CelebrateDifferences!

What have these people been smoking? Do they know anything about autism? Have they met autistic people like my son? If they did they definitely would not celebrate autism. Not for a second. They would hate autism. HATE IT. They would do anything to make it go away.

For my son, autism is hitting himself hundreds of times each day.

For my son, autism is not being able to talk, or communicate, only moan, scream and grunt.

For my son, autism is not being able to go anywhere, being stuck at home all day, because it takes three people to safely take him out and I don’t have that sort of help.

For my son, autism is living in pain, agony, isolation and poverty, forever.

It is not a #Difference. It is #PureHell.

For my son, autism is siblings who love him but who will not and cannot care for him when I die.

For my son, autism is seizures and pain, and trips to the ER (where they don’t know what to do with him), and calls to 911 (and they don’t know what to do with him either).

For my son, autism has ruined every moment of his life.

#CelebrateDifferences is NOT ACCEPTANCE! It is the opposite! It is REJECTION!! It is rejection of people like my son and his horrible fate!

I hate Autism Acceptance day — I will never accept what happened to my son. Never, never, ever.

Juana C is the pseudonym of a mother of a young man with severe autism. She lives in California.

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.

New Report Details Alarming, Relentless Surge of Autism in California

Even limited to more severe forms, autism prevalence in America’s most populous state continues to grow; a 4,300% caseload increase over 35 years

Read the report here.

San Mateo, California, April 2, 2021 — A new report issued by Autism Society San Francisco Bay Area (SFASA) documents the dramatic, relentless growth of autism cases in the state’s developmental disability services system over the last 30+ years, a trend that continues to today. The report, “Autism in California 2020: A report to the public,” shines a light on an enormous and escalating public health crisis that has dropped from the public eye as the nation has focused on the Covid-19 pandemic.

Based on data from the California Department of Developmental Services (DDS), the surging rates of autism have yet to plateau in the nation’s most populous state, despite widely held assumptions that autism rates would flatten after the unexpected increase in autism rates were first detected in the late 1980s and 1990s. DDS data encompasses cases with significantly disabling autism, and omits milder forms of the disorder. California has long been recognized as keeping the best data on developmental disability-qualifying autism in the country, owing to the requirements of the state’s unique Lanterman Act.

“On this Autism Day 2021, nothing can be more important than reminding the world that the devastating surge of disabling autism, now in its fourth decade, continues unabated,” says SFASA president Denise Haas. “The implications for policy and research are profound.”

Autism was a rarity in the DDS system through the 1980s, but caseload growth has been relentless since that time. Now the system has about 133,000 autism cases, a phenomenon that has overwhelmed the state’s regional centers, which report that about 70% of all intakes are now autism cases.

Some highlights from the report:

• The DDS autism caseload was about 3,000 in the mid-1980s, but has reached about 133,000 today, reflecting growth of about 4,300%.

• About 10,000 new autism cases, the vast majority of whom are young children, are now added to the DDS caseload each year.

• Birth year prevalence of DDS autism is about 1.5% for children born in 2014, up from .04% for those born in 1980.

• A massive expansion in adult services is needed: for every 40-year-old with DDS autism in 2020, we can expect to see at least 27 40-year-olds with DDS autism in 2054. Much more attention is needed on the critical question of what happens when parents can no longer care for these disabled adults.

The prevalence of DDS autism has increased approximately 11% per year. As of birth year 2014, nearly 1.5% of all children in the state qualified as DDS autism cases (a number that may increase as more cases enter the system).

• In the 7 years from 2013 to 2020 DDS added as many autism cases as in the 33 years from 1980 to 2013.

• Consistent with trends in other states and nationwide, autism cases in DDS are about 4:1 male to female.

• The steady rise in children receiving DDS services is evident in all racial/ ethnic groups. Far from plateauing, the trajectories in early childhood appear steeper in recent years. Children of Hispanic (vs. non-Hispanic) mothers were less frequently diagnosed with ASD, but this is changing. 

• The hypothesis that the increase is largely due to greater awareness, changing criteria, and other diagnostic factors has not been substantiated with respect to DDS autism rates: DDS criteria are significantly more stringent than general diagnostic criteria, and grew more stringent in 2003. The forces behind the surge remain largely unknown, but the hypothesis that vaccines are responsible for the increase has been firmly ruled out by numerous scientific studies.

“We are facing a public health crisis of epic proportions,” says Haas. “This unambiguous data carries grave implications — how can we radically expand services and funding to support an unprecedented population of autistic adults who cannot live on their own? Where will they live and who will care for them after their parents no longer can? Current research targets have failed to make serious inroads into understanding causes of the autism increase that has plagued increasing numbers of children over the past 30 years, and we still have no roadmap for the future for the burgeoning population of disabled adults.”

The California report comes on the heels of a presentation on New Jersey autism rates by Dr. Walter Zahorodny, PhD, of Rutgers Medical School, as part of the National Council on Severe Autism Policy Summit. He reported a recent and alarming finding that autism rates in New Jersey were also increasing without a plateau, with recent data indicating autism rates of about 9% in that state’s largest suburban school district. CDC data has already shown that 5% of all 8 year-old boys in New Jersey have autism. Recently published data from other countries has also shown a continuing increase in autism rates, including North Ireland, Japan, and Denmark.

The report is the result of a collaborative effort among advocates and researchers. SFASA wishes to thank the experts who contributed to the Autism in California 2020 report, including Irva Hertz-Picciotto, Ph.D, University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; Jennie Sotelo-Orozco,Ph.D, Department of Public Health Sciences, UC Davis School of Medicine; Alexander G. MacInnis, M.S., M.S., independent researcher; Elizabeth Angel Guerrero, M.S., University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; Yunin Ludeña, M.S., M.A., University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; with assistance from Judy Van de Water, Ph.D, UC Davis MIND Institute; Jessica Cacioppo, M.S., UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; the board of directors, SFASA; and the staff at California DDS who contributed the raw data.

For more information, please contact:
Autism Society San Francisco Bay Area, info@sfautismsociety.org
National Council on Severe Autism: info@ncsautism.org

No, NCSA Is Not “Alt-Right”

Autism wars take ugly turn following inflammatory charge

(Stock photo of a man pointing in an accusatory manner.)

By Amy Lutz

I’ve faced many accusations since I began advocating for my severely autistic son Jonah, now 22, and other families like ours. Once my younger kids got old enough to Google me, for example, they wanted to know why I hated autistic people – as they read on one neurodiversity blog. I’ve been called a bad writer, a worse mother, and an ableist. But this is one charge I never in a million years thought I would have to defend myself against.

When a friend on social media recently alerted me to a post that described me as “alt-right,” I assumed there was some mistake. I am both Jewish and a lifelong Democrat – hardly what the Anti-Defamation League was envisioning in its definition of a coalition defined by its rejection of mainstream politics and its embrace of virulent racism, sexism, Islamophobia, and anti-Semitism. 

It wasn’t just me. A little digging revealed that NCSA as a group and President Jill Escher individually had also been branded as “alt-right,” “reactionary,” and “fascist” by neurodiversity proponents, even though such accusations are patently absurd. In point of fact, our board is a mashup of Jews, Christians, Muslims, Democrats and Republicans, and of course not a single alt-righter. What unites us is our shared personal and professional commitment to the severely autistic and their families, a mission that transcends whatever differences we may have.

Moreover, NCSA represents a broad coalition of diverse people from many backgrounds. We draw public support from across the socio-economic and political spectrum –  because that’s exactly what it means to hold mainstream, consensus positions. The issues at the core of NCSA’s advocacy – that severely autistic adults should enjoy the same rights to choose where and with whom they live, work and recreate as the non-disabled; and, if cognitive impairments preclude self-determination, that those decisions should be made by family members, not complete strangers who happen to share the same diagnosis – are not only decidedly not “alt-right,” they strike most people as simple common sense. Just consider the impressively diverse list of signers on this open letter to The New York Times from August 2020, which called the paper to task for excluding those with significant intellectual and developmental disabilities from their coverage of the 30th anniversary of the Americans with Disabilities Act.

Over 70 autistic adults, family members, researchers, clinicians and providers representing the entire ideological gamut – including writers from the proudly lefty Huffington Post to the staunchly conservative National Review – added their names (and we could have included thousands more, but opted not to for obvious logistical reasons). In our extraordinarily polarized political climate, is there anything else that has enjoyed that level of bipartisan support? 

Is this the moment neurodiversity proponents “jumped the shark” – when they abandoned any pretense of engaging with NCSA’s actual positions and resorted instead to trying to discredit us with hysterical mudslinging? This is a classic example, in other words, of what is called the “ad-hominem fallacy,” attacking the person instead of the argument, usually because the argument itself is too strong. Which means, I suppose, that I should just explain to my kids that these bizarre insults are really just back-handed compliments that confirm the strength of our positions. Still, I admit my sensibilities were strangely offended at such sloppy character assassination: couldn’t they have made even the slightest effort to come up with a more convincing epithet than “alt-right”? 

Amy Lutz is Vice President of 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.

“I tried to take my life last August”

The mother of an adult son with severe autism shares her heartbreak: “There is no end to the torture this world has in store for him”

Matthew then and now. No china in our china hut—severe autism parents might relate!

By Sharon Fair

My son Matthew was born in a toilet at a Denny’s outside of Sacramento. His birth mother went to prison after injecting him, as an infant, with heroin. Of the many cards stacked against him, Matthew also has severe autism.

Raising a son who literally would not sleep and not stop moving, climbing, jumping, running was not exactly easy (you can see a old TV news story about us here), but now that he’s an adult we’ve seen a new host of problems. Mainly that the systems set up to serve the disabled and the mentally ill are not equipped to handle our kids.

Out of desperation I recently took Matthew to a psych hospital a few weeks ago. One week in they drugged him so heavily he slept for 25 hours "and the nurses were loving it!"

I found out that during that week, the staff had performed five "takedowns" on my son and that eight injections were given. His cheekbone was also fractured, probably related to an encounter with the sheriffs. I took Matthew out of the psych hospital only to be berated by my state worker for doing so.

Matthew's brain function dwindles and his aggression increases with every assault on his brain. Every time he's thrown to the ground and injected with more of the drugs that hurt him, he trusts less, he functions less.

Every assault in the last year was by someone he should've been able to trust. Group homes, ADH caregivers, social workers, a DDD worker, APS workers, doctors, nurses, police, deputies and every person who should've stepped up for him, that didn't.

And who takes the brunt of his frustration at all this injustice? The person who won't walk away, and he knows it.

I read recently about a mom in Connecticut who drove into a river and drowned herself and her special needs adult son.

The news story said she was such an amazing woman, always on campus, and her son was loved by everyone. It doesn't say that she was always on campus because she probably couldn't get the services he needed, so she did them herself. It doesn't say that her son probably had no friends after high school.

It doesn't tell our story.

I'll be honest and tell you I tried to take my life last August when I thought I'd lost Matthew to the system that was killing him. I felt I had no one on my side. No one understood my love for him.

I'd be lying if I said I haven't thought of taking both of our lives to spare him more of the indignities he's experienced. There is no end to the torture this world has in store for him.

Thankfully, I woke up and realized that we're here for a reason and we have to finish this journey, no matter how unpleasant. Thankfully, I also found others who have it worse than us. Other parents here have journeys that I can't even fathom!

I can be a support instead of a whiner. I can do that.

I feel for that mom who felt she had no other options than to die that day. I even understand her. I wish her peace and hope she and her son are together without limitations. I wish her real story was told.

Matthew is in the hospital again. I asked the doctor what I should do when he tries to kill me and he said, "take him to the hospital.” But I took him to a different hospital in hopes of getting him transferred to a hospital in Phoenix that has an Autism unit. So far insurance is denying it.

My other son, Ricky, who died, would be 40 on Monday and I'm completely depressed. This, too, will pass. Right?

Sharon Fair is the mother of an adopted son with severe autism. They live in Arizona.

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.

A break in routine breaks my autistic son

A prose poem about structure, predictability, and the blessings of school, by a single dad of a son with severe autism

By Jason McCarver 

My son is 12, severely autistic, epileptic, ADHD, with learning disabilities. 
He’s attended school since he was 3 years old, started with a Headstart preschool
A week after his 3rd birthday. In all those years he’s missed school maybe 5 
Times due to being sick. The only other time he misses school are holidays.

Routine for my son is extremely important, it keeps him calm. Without routine 
My son regresses to almost a toddler and starts having meltdowns involving 
Self harm. He punches, scratches, smacks himself. Screams and hollers at the 
Top of his voice, which lasts for hours and hours sometimes.

The routine of school is very important for my son, without it, it’s almost impossible 
To get him to remain calm and focus on other things. Every time there’s a holiday,
I have to prep him for it, starting a month ahead of time. Even with extreme prepping 
Daily reminders etc, he still freaks out when the holiday arrives and school is closed.

Preparing him for any type of change in his routine is pointless, once his routine is set in place 
He expects it to happen no matter what. There’s no bargaining or really any skill that helps.
I basically have to detox him from the routine, if it’s only for a day, I just ride out the meltdowns.
If it’s for an extended period of time, I have to detox him from everything associated with the routine, and establish a new one. 
It sounds extreme I know, but it’s absolutely necessary in order for him to function.

This leads to confusion and conflict, and after he’s finally settled into a new routine, it has to end
And the old one starts back up, and hell no it’s not an easy transition back. 
The transition back usually consists of meltdowns involving self-harm. It’s truly an never-ending cycle of hell my son goes through.
It’s also the main reason I tell whoever is working with my son, only introduce things to him you’re prepared to do pretty much daily. Once he gets attached, it becomes part of his routine and nothing is going to make him break his routine without resistance.

Our daily home life is also built on routine, very structured doing the same thing every damn day 
All the damn time. 
The older my son gets, the bigger he gets, the stronger he gets, and the worse his meltdowns get.
His school is very much aware of his his meltdowns and how bad they get.
His whole entire school day is built around his needs, his routine is structured so he can easily do it everyday.
Only if school was open 365 all year long, that would be like heaven.

Jason McCarver battles nonsense in the Twitterverse with nuggets of personal wisdom. Follow him on Twitter @jayhood73.

Autism is a living hell for my son. I'm supposed to celebrate that?

“Ben cannot speak, is in diapers, doesn’t sleep, cannot sit still, hits himself every single day, puts his head through walls and windows, needs us to brush his teeth, bathe him.”

By L.A.

I recently saw an article on the new movie, Music, where the uninformed author wrote that the worst part of the entire movie is that it leads us to believe autism is a struggle.

This recent incident got me as it is one of the biggest issues I have with autism...

I then mentioned to someone that I had a son who is severely affected by autism and the response was, “Me too. It’s tough but I wouldn’t change a thing.”

Now, years ago I would have sheepishly agreed.

For some strange reason we parents have to celebrate this struggle our children go through because God forbid someone get the wrong idea and assume we hate our child.

This is such a strange phenomenon that has happened over the years with severe autism, thanks to the nightmare that is the spectrum.

I have never had to explain to anyone ever that I still love my husband while describing the struggles that come along with his type 1 diabetes.

It truly baffles me.

Yet, I am expected to celebrate my son’s biggest struggles. To hide the hell he goes through. If you don’t understand, then you don’t know this level of autism and that’s ok. I’m here to explain.

See, I’d give anything to help Ben while autism is doing the very opposite. Autism is a neurological disorder and it affects everyone differently. Ben is deeply affected.

Ben is a person. A beautiful person with an amazingly sweet and kind soul. A few “cool quirks” that autism might bring isn’t collateral for what he has to struggle through 24/7. That is key to understanding this end of the spectrum.

“No parent should ever feel bullied into suggesting their child’s suffering is a gift. Ever.”

Ben cannot speak, is in diapers, doesn’t sleep, cannot sit still, hits himself every single day, puts his head through walls and windows, needs us to brush his teeth, bathe him. You name it... he needs our assistance. You get my drift. Nothing is simple for him.

We can’t take him out in public any longer (especially now with the pandemic), he’s stronger than most grown men. He needs sedation for the simplest things and is on an unbelievably strong cocktail of meds to keep him from beating himself to death.

You will never ever find me parading Ben around in autism gear... EVER! That is not Ben. (Another BIG pet peeve of mine but to each their own).

Ben is Ben. Ben deserves so much and it bewilders me that I’m supposed to scream to you all that it’s a gift what he has to struggle through.

That’s not ok.

To me that is only meant to show you how wonderful I am as a mother in some sick twisted way. Look at me loving him regardless. (Yuck!)

Now, in my World... this is my dearest son who I’d do anything for. As far as I’m concerned no parent should have to explain that.

I don’t think he would choose his Mom to be around him 24/7 caring for him in every way at age 16. I think he’d like to be doing what most 16 year olds are doing. I would also bet he’d love to speak/communicate to tell us the simplest things we all take for granted, such as “my stomach hurts” or “I feel sad today”. Instead he puts his head through our walls to express his frustration and pain.

Shame on anyone that can’t see that is struggling with autism!!

My son deserves the same as everyone else and I will do everything to see that through.

He is my greatest gift and autism has no place in that sentence and I think he’d be angry at me if I attempted to portray it any other way.

Autism is a spectrum... it is not the same for everyone. That is key. The different perspective deserves to be heard and absolutely respected!!

I got you Ben. I see what you do daily and I hear you. No words needed. I see your struggle and I know how hard you fight.

No parent should ever feel bullied into suggesting their child’s suffering is a gift. Ever.

Nor should any stranger suggest autism isn’t a struggle for some. That is absolutely something only someone who is uneducated would suggest.

If you feel it’s a fun quirky gift... that’s your choice and I respect that but not this Momma. Not in the World we are living in. As far as I’m concerned this side deserves respect too.

Nor does me speaking out mean in anyway that I dislike my child. Quite the contrary.

L.A. is the pseudonym of a mother of son with severe autism. They live in Minnesota.

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.