My family’s autism services are working for us, so we will probably lose them

Yesterday was rough.

I very rarely talk about my child because her privacy is important, so I will keep this as vague as possible. We had a tough day, though.

While we do everything we can to avoid autistic meltdowns, sometimes the world just throws a set of circumstances at life faster than their developing and hyper-reactive nervous systems can adjust for.

Yesterday was that day.

If she witnesses any kind of cruelty or power imbalance out in the world, she may experience a meltdown. A teacher yelling at children during a field trip to a park she’s visiting– that can cause her to be terrified to leave the house for a very long time. Kids being mean to her or each other can be hard.

And while her days are generally pretty smooth, and she is the happiest child I’ve ever known, that is not a matter of inherited disposition. It’s because her needs are being met.

It would take very little to totally disrupt that equanimity, and the damage would be irreversible.

The Current Supports We Have are Ideal

My child currently has access to attendant care. What this means is that I’m able to hire someone to work with my child. This has allowed me to hire an amazing person, an autistic mother to an autistic daughter I’ve known for years, to support my child.

Every weekday, childcare comes. I have ensured that I hired someone who is easy to communicate with and safe, who is intuitive and shares my philosophies, and who communicates well with me and my child.

As a mother to an autistic child herself, and as an autistic person, she understands. She knows ADHD. She knows PDA. She reads and studies and gets it from every angle. Like many autistic adults, she’s overqualified. She was a Montessori teacher.

She supports my child with her homeschooling, plus arranges lots of playtime with safe, local friends, several who also have neurodivergent children.

Academics are tailored to my child and only require a few hours a day to be far more effective than a traditional classroom. She can’t focus without pacing and moving a lot, which is fine in this setting. She is working way ahead of grade level in every subject.

How Did We Get Services in the First Place?

Typically, it can take years of being on a waitlist to get services. Not for us. We bypassed every waitlist and were instantly given services.

As a very young child, it was clear that our need was extreme. My child was labeled with “severe, classic autism” and “severe intellectual disability.” She also has severe Ehlers Danlos, hypermobile type, so her joints are like rubber. She is very prone to injury, and with her dysregulation, dyspraxia, and frequent meltdowns, she was injuring herself.

My child would still have all those qualifiers, I’m certain, if we didn’t arrange her life the way we have. But now, they will call her “high functioning” and “well adjusted” and hyperlexic.

If It’s Working, Why Would We Lose Services?

Every few months, we are visited by a worker from insurance or a local facilitating agency who re-certify our services.

At the last one, they asked my daughter a lot of questions. Typically, a parent would feel a lot of pride when someone asks their child about when they’re feeling frustrated, and their child details a ton of strategies they use to manage their sensory and emotional health.

Honestly, my child sounds far more knowledgable than most “autism professionals.” This is because of my privilege to be able to spend a lot of time working with many of the greatest and most insightful professionals and autistic advocates in the world.

I never have a situation come up that I can’t access the community that surrounds me for advice.

I work hard to make that knowledge free and accessible to the public so that others can access the same community and supports.

But because my child is now able to use speech to reliably communicate when she’s regulated, and she seems so articulate and knowledgable, she is at risk of not meeting the criteria for services.

Yesterday’s Two Meltdowns

Yesterday, my child had two meltdowns. One at the park– well, in the car before going to the park, and one when she got home.

When she came home, she looked like she had two black eyes and her face was red and scratched.

This was from how hard she rubs her face when she’s distressed.

Within one minute, she was having another meltdown. She had been bottling it up until she was in her safe place— the way autistics do, then explode when they get home.

I will not share details of what it was like, but if she had been in a school, she would have been restrained and maybe removed in handcuffs or an ambulance.

Do you know how dangerous restraints are for children? Especially children with connective tissue disorders like Ehlers Danlos?

The autistic son of one of my best friends was killed by his teachers in a restraint. I just collaborated on an expansive report about the devastating reality of restraint and how it impacts autistic kids.

The things she said were things she heard kids say on the playground. She had witnessed bullying and cruelty.

Meltdowns are like seizures. She would never say or do those things if her brain were not experiencing a neurological storm. She couldn’t process her emotions surrounding that.

But those things would not float in a school. In a school, she would have been in trouble for this.

And in a school, those meltdowns would come all the time. She would experience extreme trauma. She would be put into multiple therapies that would make everything worse, she would lose more autonomy, she would feel more “othered,” and the intensity of being “managed” and “modified” would have the opposite impact of helping her regulate.

I’m not afraid of my child’s meltdowns. They happen very rarely now because we usually are able to accommodate to prevent them.

She has a lot of strategies to manage herself, but she absolutely has neurological and developmental limits that would make any traditional school setting far too much for her sensory and nervous system to handle.

Is It Too Expensive?

As a “taxpayer burden,” this is about the least expensive path we could take.

It can cost a public school more than 20 times the amount than the average cost per pupil to provide an education for an autistic child with high support needs. This figure can exceed $100,000 (USD) per year. Add in intensive behavior interventions, and that is an additional $60,000-80,000 per year.

And when your child becomes too dysregulated to speak, add in more for speech therapy. And when your child is self-injuring, especially when they have medical conditions, add in more. Add in physical therapy for the motor planning and occupational therapy for the sensory, too.

Her services are inexpensive compared to even attending public school.

Because that’s what every professional already tries to push at every appointment.

Yes, my child is going to have extreme sensory dysregulation and self-injurious behaviors if forced to fit into a world that’s far more intense than her nervous system has the capacity to process.

She is not currently able to stay regulated for the intensity of the social, sensory, and cognitive load of school with that many transitions and demands.

Why Change What Works?

We are already living as proof of concept of what can be possible when an autistic child lives in a world that works for their needs. Our life is not easy, but her services give me access to the best case scenario with regards to meeting her needs. And mine. And my autistic husband’s.

By every measurement, she is excelling beyond all the doom-and-gloom forecasts that every single expert has anticipated.

That’s because we had what we needed.

We had the community we needed. We had the services we needed. We had the information we needed.

Public School and Demand Avoidance

Public school would not work for my child for so many reasons. I was a public school teacher for 14 years, and I know that the best case scenario would still be disastrous.

“Least restrictive environment” in practice translates to “fewest accommodatons possible.” Academic capacity— not the level of excitement of the nervous system or the pain of Ehlers Danlos or the sensory dysregulation or the social differences— determine accommodations.

After writing just a few words, my child is aching in pain from writing. She has motor planning struggles, she presses very hard when she writes, it’s very messy, and her hand hurts badly because of hypermobility.

But, she can’t tell someone what she needs if she’s dysregulated. Nothing she says will make sense because speech is the first thing to go. If they keep asking her or pushing her, she gets more dysregulated.

If she gets frozen during a fire alarm, because the noise will be traumatic for her very sensitive ears, she will be forced out. She will feel humiliated and traumatized every time she is restrained. Compliance training will be traumatic. She’s not being non-compliant. Her body and brain freeze.

A True Nightmare Looms

My child is surrounded by autistic role models, friends, enrichment, and support. She knows her neurology and needs, how to communicate them, and how to find joy and stay regulated. She’s excelling in every subject academically.

A rare meltdown is easily recovered because they are rare, she has time to have her needs met, and there’s no shame put on her. She knows what they are, so they’re not as disorienting.

We go many months without a meltdown, and the time between is more spaced out as she ages. Each one is an opportunity to learn more about what causes that dysregulation and how to prevent it in the future.

In this case, she had witnessed a child using force on another child, yelling mean things– bullying. She was unable to process that, so we know we have some work to do about how to process those emotions in the future.

We are fully equipped to handle that without professional assistance. We have a beautiful community. We can work this out. I have a direct line of communication with her support worker.

But without those supports, everything in our lives would be catastrophic.

“Parents know what’s best”

Right now, I feel at risk of losing my ability to serve this org and the services that keep our family afloat. No one who witnessed yesterday’s meltdown would consider removing our services, but they won’t see that kind of catastrophe during a pre-scheduled visit from a nice lady to our home.

I won’t have a long paper trail documenting these events because I’m not seeking services to support us through them. I’m not reporting them to a professional because we have what we need.

It’s time for politicians and the autism industrial complex to stop standing on the moniker, “Parents know what’s best for their children,” if they are going to allow the removal services our children need as soon as it’s working for them.

I’ll fight. Heaven knows that I will rearrange the whole world to get what my child needs. The whole world knows, actually. I have millions of witnesses.

I cannot let my child be exposed to the severe and enduring trauma that I and my team experienced as autistic children.

Complex PTSD from not being understood and supported– not autism– is what has made our lives so hard.

Now that we know better, there’s no excuse to not do better. Not when one of the main causes of death for autistic people is suicide.

Because let’s be honest– no school or intervention out there can be expected to have solutions that work for all autistic children. We all know it’s not working.

We have solutions here. We have this under control. Why put us in the cyclone of the failed science experiment that we– all of us in this community– know is not healthy or functional?

What we need, and what we have, is unique to this family given our circumstances. It might not work for everyone, or even most people, but what we need is what we already have.

It is providing accessible employment for her autistic attendant. It is supporting her autistic daughter and mine.

Do you know “career coaches” get paid over $20 an hour to supervise disabled adults working minimum wage (or less) jobs? But I can’t hire an autistic person to support my autistic child so I can run this org and support autistics globally?

Why should I have to fight? I’m so tired of fighting so hard for everything.

Why should I waste time breaking my own heart and soul to avoid losing the most cost-effective, emotionally, developmentally, and academically supportive life tailored to meet my child’s needs? It benefits no one to remove these supports, but apparently Virginia wants me to sacrifice my child at the altar of expensive traumas.

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18 Responses

  1. Terra, your daughter reminds me of myself at a younger age. I did and still today experience pain at seeing people suffer. I’m so sorry about what you are going through, and I don’t know if you will believe what I say right now, but you and your daughter are strong and inspiring people.

  2. This article broke my heart. Your pain & outrage resonated with my own experience as a 73 year old man early in my awakening to my life-long ADHD/ACE/neurodivergence. Diagnosed as an adult, I was fooled until very recently by the “blame-the-victim” narrative of the (literally!) dominant culture. I feel robbed of a decent life by the evils of late stage industrial capitalism and the unbalanced, i.e. insane narrative that treats people like things to be coerced and deceived to get all human needs met, and treats things like people that can meet all human needs.

    I am now working daily to lift myself out of the trap I now recognize, thanks to you and other Autism educators and advocates. If my current efforts to extract myself from the poverty my “failure to fit in” is successful, I will be in a position in a few months to support your work and of other allies in what may become a new consciousness needed to restore the “American Dream” from its status now as the “American Nightmare” that torments us all, most poignantly our precious children, and the most sensitive and gifted ones at that!

    Until that time, I offer my sincere gratitude and best wishes to keep fighting the good fight!

  3. So sorry to hear this Terra!!! Parents of autistic children seem to spend their lives trying to find a schooling arrangement that works for their child, and once you find a great one, it’s heart breaking to have it taken away. Many congrats on how well your daughter is doing!! Sounds wonderful. If the worst happens, and your daughter ends up in mainstream school, maybe you can use it as an opportunity to educate the school. I feel so blessed, the school I have taught at for 11 years, allowed me to give a workshop to staff on how to support autistic children in the classroom. I teach children aged 11-16. I live in Jordan and discussing autism is a taboo subject, so standing up and discussing my child having autism and how I have used my knowledge and understanding of autism in the classroom to support an autistic boy with an aide in the class, was a breakthrough cultural moment. It was applauded heartily at the end, twice, and then all the next day staff I didn’t even really know well were coming up to me to talk about it. As parents we have such an opportunity to educate others as we really understand what we are talking about. And for your daughter, maybe mainstream school might not be such a disaster in a long run… If you can guide her through it… I don’t know. Sounds like she has quite a growing capacity for challenge. But it will always be your call as to what is best for her. Anyway, I’m so sorry to hear this news, as I know how I would feel if it were me, and I hope you manage to find a solution which works for your daughter.

  4. I hear your pain. I have five neurodivergent children. Four are young adults. I am at a lost to find services to help them into adulthood. I have homeschooled them all so that they can be the best version of themselves. My youngest does receive services and I am like you, wondering, as he is doing so much better, will they begin to back off services. Thank you for sharing your story.

  5. Dear Terra,

    Thank you for being such a brave soul and standing for Truth and Justice. Your story and the story of your wonderful child needs to be told over and over and over again. I congratulate you for doing the right thing. Thank you for supporting Autistic people like me here in Virginia, in the USA, and around the world. We need more people like you. Once again, thank you.

  6. I was a caregiver to my high care needs autistic cousin. He was taken out of therapy while making progress, so that the insurance would forget his name. Then when they put in the paperwork 6 months or so later he was accepted for his in home therapy. Thing is he wasn’t taking to aac or sign language, but he was communicating with youtube videos. He found videos with phrases like I want to go outside sesame street song. I understand what you are going through, and its not okay. Autistic children need to be met with patience, and observation to figure out what they need. Not try to mold them to the communication style you want them to have. Yes give them all the options, but if they find their own way to communicate pay attention.

  7. I know this fight. You describe my life too. I am the mother to 3 children with special needs, 2 of them have autism. My husband and I forged our own path for our children. We homeschooled (and are currently with our youngest). We used services available in very creative ways to lead and guide our children to be the best versions of themselves while also avoiding further trauma whenever possible. Yet, we have had to fight continuously to keep the services that keep each one of them functioning at their optimum. It is simply wrong that that is the way it is.

  8. Dear Terra,
    Thank you for your truth, bravery and sharing. I am neurodiverse and engage young learners in Australia as a neuroscience play therapist. I see the change and the deep integration that happens when young neurodiverse peoples have a neuroception of safety, connection, authenticity and truth. In Australia I have to fight hard to prove that play therapy and creative arts matter, that engaging with a kiddo’s nervous system is the starting place for all grounding. I am sorry to hear how difficult this process is and sending energy and strength across the globe. It is people like you that are the change I wish to see in the world. Mel

  9. If the ‘professionals’ are trying to push attending public school, to me that looks like they’re looking for a something like a ‘cured’ label. Anybody knowledgeable enough about the subject matter knows that that is not something that is going to happen, hence, you need the support for her to thrive. This must be so enormously frustrating. I hope you’ll be able to continue providing your daughter with what she so clearly needs.

  10. I am familiar with this conflict. You also sum up my existence. Three of my kids have unique needs, and two of them have autism. For our children, my husband and I carved out our own route. We did (and still do, with our youngest) homeschool. To lead and assist our children to be the greatest versions of themselves while also avoiding more trauma wherever feasible, we made extremely imaginative use of the resources that were available.

  11. It hurts me to know that you’re suffering. I am the mother of five children who all exhibit some form of neurodiversity. There are four young adults. I have no idea where to go for resources to ease their transition into adulthood. I’ve homeschooled my kids so they can each reach their full potential. My youngest child also receives services, and like you, I worry that as he improves, they will gradually reduce the amount of help he receives. To you for telling your tale.

  12. I have read your post very carefully and I just want to say that the information you shared is great and I have learned a lot from it and girls games.

  13. “Least restrictive environment” in practice translates to “fewest accommodatons possible.” Preach!

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