My family’s autism services are working for us, so we will probably lose them (2023)

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.

(Video) If You Laugh, You Go To Hell #3

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.

(Video) 5 Signs You DO NOT Have Autism

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.

(Video) Managing your Mental Health After an Autism Diagnosis

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.

(Video) Do I Have Autism?

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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I’m an industrial and organizational psychology consultant, parent, former language arts teacher, former DBT counselor, and founder and CEO of NeuroClastic. My passions are in social justice, diversity, inclusion, literature, science, and disability rights. I’m an unpaid volunteer. If my writing has been meaningful to you, you can
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My family’s autism services are working for us, so we will probably lose them (2)

Latest posts by Terra Vance (see all)

  • My family’s autism services are working for us, so we will probably lose them - May 24, 2023
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  • Being a Great Parent to Your Autistic Child at Fall Festivals and Halloween Events - October 31, 2022
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Why are people against ABA? ›

Studies have shown that ABA is effective, but some parents and autistic self-advocates do not support its use. One criticism of ABA is that the earliest version of it used punishments as well as rewards. Punishments are no longer used in ABA, but critics think it is still too hard on kids because it is so repetitive.

What are the challenges with autism employment? ›

Other issues that can be serious obstacles to employment for autistic adults include:
  • Social anxiety.
  • Severe sensory challenges.
  • Inflexibility.
  • Difficulty with handling criticism (i.e., Rejection Sensitive Dysphoria)
  • Lack of ability to work in a neurotypical team environment.
May 3, 2023

Why is working so hard for autistic people? ›

People with autism are often painfully sensitive to things like light and sound. This can make working in an office very uncomfortable. It may take more effort for an autistic person to focus in a traditional work environment. Coworkers may see them as distracted or unmotivated.

What are the challenges of caregivers autism? ›

Caring for the children suffering with autistic spectrum disorder is challenging and affects the life of the caregivers. Psychological distress, depression, anxiety, and other mental or physical health problems are the common symptoms that the caregivers face while caring for a child with autistic spectrum disorder.

What are the negative effects of ABA therapy? ›

Furthermore, the use of punishment in ABA therapy has been linked to trauma and negative psychological effects. Children who are subjected to physical punishment or other aversive techniques may develop anxiety, depression, or other mental health problems as a result.

What are the disadvantages of ABA? ›

The Cons of ABA Therapy
  • ABA therapy is time-consuming. Studies have shown that intensity and duration are key to effective ABA treatment. ...
  • The results of ABA therapy are not immediate. ABA therapy is not a quick fix. ...
  • ABA therapy can be expensive without insurance.
Mar 4, 2022

Can high functioning autistic people be successful? ›

High-functioning autism refers to autistic people whose living skills, including communication skills, enable them to live independently. However, the term is problematic, and it is not a clinical diagnosis. High-functioning autistic people can usually live independently and have successful careers.

What is an example of autism discrimination? ›

Direct disability discrimination is when someone is treated less favourably than others because of their disability. Example: An autistic student is excluded from a course trip because the education provider doesn't think they'll get the same benefit as other students. Direct discrimination is always unlawful.

What job do most autistic people have? ›

Because logical thinking and superior pattern recognition can be a strength in autistic individuals, careers in the science, technology, engineering, and mathematics (STEM) fields may be a good fit.

What do you think is the biggest challenge that people with autism face? ›

Due to the behavioural, information processing and sensory aspects of their diagnosis, many people on the autism spectrum often prefer familiar environments with a predictable routine. Restricted and repetitive interests, sensory processing differences and heightened anxiety can make even small changes stressful.

What are 4 potential health issues associated with autism? ›

A range of physical and mental-health conditions frequently accompany autism. They include, but are not limited to, the following:
  • Gastrointestinal (GI) problems.
  • Epilepsy.
  • Feeding issues.
  • Disrupted sleep.
  • Attention-deficit/hyperactivity disorder (ADHD)
  • Anxiety.
  • Depression.
  • Obsessive compulsive disorder (OCD)

What life is like for autistic workers? ›

Disability awareness organization Autism Speaks says that most autistic adults are unemployed or underemployed despite having the skill sets and expertise to excel in the workplace. Even those who land jobs often experience stigmas, discrimination and bullying from their colleagues.

Do autistic people work slower? ›

Consistent with the generalized slowing hypothesis, autistic individuals 1 have been observed to exhibit longer mean reaction/response times (RTs) across a range of tasks as compared to age-matched neurotypical individuals (Haigh et al., 2018; Roberts et al., 2011), as well as less automaticity in processing complex ...

What are the three difficulties of autism? ›

The characteristics of autism vary from person to person but are generally divided into three main groups; difficulties with social communication, social interaction and social imagination (or the theory of mind).

What trauma is caused by ABA? ›

One study showed that participants in ABA therapy were 86% more likely to develop PTSD. Though therapists may argue that they would never intentionally harm children, the ultimate push for someone to go against their very nature is damaging (Kupferstein, 2018).

What do autistic people think of ABA? ›

However, autistic individuals argue that applied behavior analysis damages their mental health and treats them as though they are a problem to be fixed.

When is ABA therapy not effective? ›

When people say ABA therapy doesn't work, it's probably because of external variables. If you reinforce a desired behavior, it will go up. This has been proven over decades and decades of work. But if you have all these confounding variables, the current treatment package of ABA may not appear to be working.

What are examples of ABA consequences? ›

For example, if a child screams or throws a tantrum, the consequence may involve the adult (the parent or teacher) withdrawing from the area or having the student withdraw from the area, such as being given a timeout.

Is ABA the best treatment for autism? ›

Myth #1: ABA therapy isn't backed by science.

Numerous studies have proven that ABA is an effective therapy for individuals with autism. Both the U.S. Surgeon General and the American Psychological Association recognize ABA as a best practice for children with autism spectrum disorders as well as adults with autism.

What is the success rate of ABA therapy? ›

Applied Behavior Analysis (ABA) therapy is among the widely preferred treatments for autism. With an over 89% percent success rate, the treatment can be considered a go-to plan for autistic pediatric therapy.

What is high-functioning autism called now? ›

As of 2013, Asperger syndrome and high-functioning autism are no longer terms used by the American Psychological Association, and have instead both been merged into autism spectrum disorder (ASD). As of 2021, the World Health Organization also retired the terms and merged them into autism spectrum disorder.

How do people with high-functioning autism feel? ›

In children and teenagers with high-functioning autism, this can present as a limited social circle, difficulty completing group work, or problems sharing toys and materials. Many people with ASD have sensory difficulties. Certain tastes, noises, smells, or feelings can be intolerable.

What is the life expectancy of someone with high-functioning autism? ›

Long-term research that involved following a group of individuals with autism for two decades indicates that the average life expectancy for some autistic people is about 39 years. Furthermore, this population generally succumbed to health complications about 20 years earlier than individuals who do not have autism.

Are autistic people protected? ›

The ADA is the most fundamental law protecting the civil rights of people with all types of disabilities, including those with autism. The ADA provides civil rights protections to people with autism similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion.

Do autistic people need more breaks? ›

Due to their difficulties, primarily with social communication, recess and lunch breaks are often stressful times for children with Autism—certainly not times of energy renewal. Breaks throughout the day are important for students with Autism to provide them with periods of time away from stressful demands.

Can an employer fire you for being autistic? ›

If someone has experienced autism discrimination, it is recommended to seek legal counsel moving forward. With that said, a person cannot legally be fired for being autistic.

What is the best major for people with autism? ›

Autism program specialists need to have specialized knowledge and experience in ASD and at least a master's or bachelor's degree in education, psychology, social work or human services. Further certifications may be needed depending on employer or state.

Do autistic people succeed in life? ›

Success in Autistic Adults

Some adults with diagnosed autism are moderately to highly successful people. 6 Some are happily married and partnered, and many are fully employed. Some have even become role models for young adults on the spectrum who hope to live full, independent lives.

What is the unemployment rate for autism? ›

More than 66% of young adults on the Autism spectrum are unemployed and are not engaged in higher education 2 years after exiting high school.

What are the weakness of people with autism? ›

Deficits in social interactions: This can include discomfort with eye contact, lack of reciprocal conversation, and difficulty with non-verbal communication such as understanding body language and social cues. They may also have a harder time making friends due to these challenges.

What can make autism worse? ›

Sensory overload, changes in routine, social isolation, co-occurring conditions, and lack of support can all exacerbate the symptoms of autism. However, with early intervention, therapy, and support, individuals with autism can manage these challenges and improve their quality of life.

What are some weaknesses of autism? ›

These secondary challenges of autism include:
  • Speech and language difficulties.
  • Intellectual disability.
  • Sleep problems.
  • Attention problems.
  • Epilepsy.
  • Anxiety and depression.
  • Difficulties with fine and gross motor skills.
Mar 10, 2016

What looks like autism but is not? ›

There are other brain disorders that mimic autism symptoms, like ADHD and anxiety disorders, including selective mutism. Autism can be misdiagnosed as another disorder with some shared symptoms.

What part of the body does autism generally affect? ›

Autism spectrum disorder (ASD) is a heterogeneous, behaviorally defined, neurodevelopmental disorder that has been modeled as a brain-based disease. The behavioral and cognitive features of ASD are associated with pervasive atypicalities in the central nervous system (CNS).

What happens if autism is not treated? ›

Untreated autism causes changes in brain function that make it more difficult for the person to control impulsive behavior or think rationally about their actions before they act on them. This can lead to situations where ASD adults are unable to live alone and take care of themselves without assistance.

What should you not say to a family caregiver? ›

5 Things to Avoid Saying to a Family Caregiver
  • “You Really Look Tired” ...
  • “Your Loved One Used to Be Such a Wonderful Person to Be Around” ...
  • “If I Were You, What I Would Do Is…” ...
  • “You Should Just Put Your Loved One in a Home” ...
  • “You Shouldn't Worry So Much”
May 6, 2021

What a caregiver should not do? ›

7 Things Adult and Senior Caregivers Should Avoid
  • Don't be on your phone. ...
  • Don't offer additional services without a contract. ...
  • Don't cut your client out of the loop. ...
  • Don't steal. ...
  • Don't make them feel ashamed. ...
  • Don't be stubborn. ...
  • Don't violate your own boundaries.
Mar 22, 2018

What is the hardest responsibility of a caregiver? ›

Stress – Taking care of a loved one and being responsible for their health can be very stressful. There are a lot of tasks to juggle, from managing medications to helping with getting dressed or bathing. If you're feeling stressed, try to set aside little breaks throughout the day.

Can ABA cause trauma? ›

ABA therapy has the potential to cause trauma in some individuals.

What can I use instead of ABA? ›

Alternatives to ABA Therapy
  • Cognitive Behavioral Therapy (CBT) ...
  • Floortime Therapy. ...
  • Music Therapy. ...
  • Play Therapy. ...
  • Relationship Development Intervention (RDI)‍ ...
  • Social Skills Group.
Nov 30, 2021

Is ABA good for high functioning autism? ›

ABA Therapy is one form of autism therapy that has been proven to be very successful in helping children with high functioning autism reach their fullest potential. ABA therapy takes a scientific approach to understand how people learn new behaviors and rewire the innate reactions of children.

What are the possible harms of ABA therapy on individuals with autism? ›

The Harms of ABA Therapy High-functioning autistic individuals learn helplessness and obtain lower self-esteem by relying on specific prompts. This damage done by ABA therapy increases the person's reliance on others.

How stressful is ABA therapy? ›

Working in ABA therapy can be stressful, and experiencing burnout from time to time is completely understandable. Creating a post-work routine that allows you to relax, unwind and leave work at the office is one of the best ways to avoid job fatigue.

Does ABA try to stop stimming? ›

Start Applied Behavior Analysis (ABA) Therapy

Work with the right resources and programming to effectively manage stimming.

Can parents do ABA therapy at home? ›

In-home ABA therapy helps parents and caregivers take a more active role in their child's autism treatment. Parents can watch and learn during the sessions, which can help you better understand how to support your child's skill development.

Can ABA be done remotely? ›

Once you're up and running, you'll find that providing ABA therapy remotely is not unlike providing your services in-person. You'll enjoy face-to-face therapy sessions, and you'll quickly settle into routines that both you and your clients find highly effective and practical.

What is the best age for ABA therapy? ›

ABA works with people of all ages, but it is best to start as early as possible. Most children are between 2 and 6 years old when they begin ABA treatment.

Is 40 hours of ABA too much? ›

For a young child diagnosed with ASD, best practices recommend receiving 25 to 40 hours per week of intense, Comprehensive ABA. For older children, typically 8 years and above, Focused ABA is probably appropriate, based on your goals and desired outcomes.

Who benefits most from ABA therapy? ›

ABA therapy can help people living with ASD but also those who suffer from attention deficit hyperactivity disorder, obsessive compulsive disorder, panic disorder, post traumatic stress disorder, and/or other intellectual disabilities.

What is a better term for high-functioning autism? ›

Asperger's syndrome is often described as high functioning autism. Symptoms are present, but the need for support is minimal.

What is a good degree for high-functioning autism? ›

Autism program specialists need to have specialized knowledge and experience in ASD and at least a master's or bachelor's degree in education, psychology, social work or human services. Further certifications may be needed depending on employer or state.

What is the best therapy for high-functioning autism? ›

Treatment for high-functioning autism

Occupational therapy, physical therapy, and talk therapy are all alternatives for autism treatment. However, Applied Behavior Analysis (ABA) is commonly regarded as the "gold standard" of autism therapy.


1. Critical Inquiry into Autism
(Senator Hollie Hughes)
2. Preventing Autistic Burnout: FULL GUIDE
(Thoughty Auti - The Autism Podcast)
3. Once a non-verbal child with autism, Ava hopes her story will help other kids with special needs
4. Autism and Sensory Processing: Able To Care Podcast #006
(Able to Care Podcast)
5. 4 Things NOT to Say to Your Therapist
(Kati Morton)
6. The Truth About my Son
(Mark Rober)


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