There is a phenomenon most people have experienced but few can name with precision.

You mention something in passing — a brand, a health condition, a city you've been thinking about visiting — and within hours, your phone surfaces an advertisement for exactly that thing. The experience produces a particular kind of unease. It sits at the intersection of convenience and surveillance, of pattern and paranoia. You are left asking: Was I being listened to? Or did I just never notice how often this appeared before I started paying attention?

Psychologists call one version of this the Baader-Meinhof phenomenon — the frequency illusion, in which something you've just learned or thought about suddenly seems to appear everywhere. Technologists call another version behavioral targeting — the sophisticated algorithmic capture of your attention data to serve you content engineered to feel personal.

Both answers are probably partially true. And both answers have something important in common: they assume you are the passive recipient of a system that already knows more than you do.

I am not a psychologist. I am not a technologist. I am a single mother, a full-time caregiver, a grassroots advocate, and the parent of a profoundly autistic, nonspeaking young man who cannot be reached by the tools the system keeps insisting should work for him.

And lately — with increasing, unsettling frequency — my life keeps getting served things I have not figured out yet.

The IQ That Cannot Be Measured

For years, a debate has circulated in autism policy and research spaces about the relationship between intellectual disability and the classification of “profound” or “severe” autism.

My son cannot be meaningfully assessed by standardized IQ instruments.

This is not a failure of him. It is a design failure of the instruments.

The field has known for decades that traditional cognitive assessments are built on assumptions of verbal compliance, sustained attention, and behavioral reciprocity that many nonspeaking autistic individuals simply cannot produce. Not because the capacity is not there — but because the access point is not there.

We are, in effect, measuring the door instead of what is behind it, then writing in the chart that the room is empty.

So I have lived for years in a diagnostic limbo that is familiar to many in my community: my son likely qualifies under multiple frameworks, but the paperwork never quite lands, the terminology shifts, and the threshold criteria for services seem to move every time we get close to them.

I learned to stop chasing the label and start chasing the supports. And then I found that the supports were also moving.

The Conversations I Was Never Taught to Follow

For a long time, there was a battle happening in autism advocacy spaces about letterboards, spelling to communicate, and facilitated communication.

Families were describing breakthroughs. Researchers were raising methodological concerns. Entire positions were forming — quietly — into policy.

I will be honest: I did not fully engage with this debate. My son has refused every AAC device we have tried. Communication remains the most difficult and unresolved part of our daily life. I placed that conversation in a mental category of not ours right now.

And then it became relevant anyway.

Because once those conversations reach the level of federal policy, they are no longer abstract debates. They become decisions about what is funded, what is legitimized, and who is allowed access to support.

I realized, not for the first time, that I was several steps behind a conversation that had been shaping outcomes for families like mine long before anyone explained the stakes in plain language.

The Tool We Became

Over the past several years, autism — and more specifically, families like mine — has been invoked by political figures and institutions in a pattern that is difficult to ignore.

Visibility, Momentum, Hope.

And then quiet withdrawal.

We have watched our children’s needs be named publicly. We have watched committees convene and promises made about transparency, accountability, and reform.

And then we watched as the infrastructure that was never fully built began to erode.

Not through dramatic repeal, but through:

budget reductions, guidance rollbacks

non-enforcement of existing mandates

IEPs that exist on paper but not in practice.

Federal obligations that technically exist while the systems required to fulfill them are quietly under-resourced.

No clear accountability. No reckoning.

Just the slow closing of doors.

I have begun to understand that hope, when deployed strategically, is not always a gift.

It can also function as a management tool.

The Day Everything Collided

This week, my son received the results of a genetic test.

A real test, ordered by a real physician, as part of a real attempt to understand something that has never fully made sense in his medical profile.

The results did not resolve everything.

But they gave shape to something.

For the first time in a long time, I felt a form of peace — not because the outcome was clearly good or bad, but because there was finally something to look at.

A direction.

And then, within hours, I read a federal announcement about a large-scale fraud involving genetic testing — hundreds of millions of dollars built on unnecessary tests promoted to patients under the language of care.

That was the moment the pattern stopped feeling abstract.

Because I was sitting inside both realities at the same time:

the legitimate search for answers

and the existence of systems that exploit that exact search

Apophenia, or Systems Overlap

Apophenia is the tendency to perceive meaningful patterns in unrelated events.

It is often used as a way to gently dismiss the sense that something larger is happening.

But I am beginning to question that framing.

What if the pattern is not imagined — just misunderstood?

What if the reason these things keep colliding is because they are structurally connected?

The classification debates affect access to services.

The communication debates affect who is heard.

The policy shifts affect what is funded.

The fraud exists in the same ecosystem as legitimate care.

I did not go looking for these intersections.

They were already there.

What We Are Not Being Taught

We are not being trained. There are experts in this field who understand the mechanics of policy, law, and research at a deep level. Their work is necessary.

But grassroots parent advocates are often positioned as participants — not students.

We are asked to show up with lived experience.

We are not systematically taught how the systems themselves function.

So when complex policy debates surface, we are expected to have positions we were never equipped to form.

When decisions are made at the federal level, we are expected to understand the implications without ever being given a clear map.

This is not a failure of attention.

It is a failure of access to knowledge.

If you are someone working inside these systems — I am asking directly:

When was the last time you stopped to teach someone how this actually works?

Not summarize.

Not include.

Teach.

Because many of us are trying to navigate systems that directly affect our children without ever being shown how those systems operate.

I Do Not Know Who to Trust

I do not know who to trust completely.

I do not know which science is unbiased and which is influenced.

I do not know which organizations are aligned with families like mine and which are aligned with something else.

I do not know whether the attention on autism represents meaningful change or something more strategic.

I do not know whether the answers we are reaching for will lead to clarity or another layer of uncertainty.

What I do know is this:

I am still here.

Still paying attention.

Still asking questions.

Still trying to understand systems that were never explained to me.

And I know that this experience — this sense of patterns surfacing before we are prepared to interpret them — is not isolated.

It is happening to many of us.

The algorithm already knows.

The question is whether we are finally going to learn how to read it.

Jenn McKinnish is the Nevada State Chair for the NCSAutism National Grassroots Network, a Board Member of the NCED Community Advisory Committee, and a Volunteer Support Parent with P2P of Nevada.

I write about caregiving, systemic failure, and the profound autism community

#StillHere #OurAutismStillHere

By Jennifer Mckinnish

Right now, I am living through one of the most agonizing seasons of my life. My mother is very ill, and I desperately want my son to come with me to see her. But my profoundly autistic son refuses to get into the car. He has, in fact, refused to leave our house for almost a year.

Recently, in my grief and panic, I found myself sobbing and begging him to just come with me. From the outside, his refusal to move might look like stubbornness, defiance, or even a lack of caring. But what I have come to understand is that something very different is happening beneath the surface — something I think of as a deep mismatch between what he feels inside and what the rest of us can see.

I am sharing this because I know other autism parents and caregivers face these unbearable moments, and sometimes a different way of understanding what is happening inside our kids can change everything.

The Illusion of Indifference

When I am crying and pleading, my son can look completely unmoved. His face is blank, his body still, his eyes somewhere far away. To someone watching, it might seem like he doesn’t care at all.

What I have learned, though, is that a quiet exterior does not mean a quiet interior. My son’s body can be in full alarm mode while his face says nothing. His heart may be pounding, his muscles tense, his thoughts scrambled, but none of that shows up in the ways most people recognize as “emotion.” It is like there is a wall between what he feels and what the world can see.

That disconnect creates an illusion of indifference. It tricks people into thinking he is cold or uncaring when, in reality, he may be feeling too much.

The Weight of “Too Much Empathy”

There is a harmful stereotype that autistic people do not have empathy. In my home, I see almost the opposite. My son often seems to absorb the emotions of the people around him, almost like soaking up a spill. When I am distraught, he does not just witness my pain; he seems to be flooded by it.

So when I am weeping and begging him to get in the car, he is not ignoring my pain. He is likely drowning in it. My grief about my mother’s illness does not just sit beside him; it crashes over him like a wave.

When his emotional and sensory systems hit that kind of overload, he does not explode outward. He folds inward. For him, overwhelm often looks like silence, stillness, and a kind of internal “log out.” He stops talking, stops moving, stops deciding. From the outside, that can look like refusal. From the inside, it is more like his whole system has hit a hard shutdown.

When Feelings Have No Words

Two more invisible barriers shape these moments with my son.

The first is difficulty recognizing and naming his own emotions. He can feel all the physical signals of distress — the tight chest, shaky hands, uneasy stomach — but not have a clear inner label for “this is grief” or “this is fear.” Trying to talk about feelings can be like trying to describe a color he has never been taught the name for.

The second barrier is what many autistic people describe as inertia: a deep, neurological difficulty with starting or stopping actions, even when they desperately want to. From the outside, it is easy to interpret this as laziness or stubbornness. From the inside, it feels more like being pinned in place.

So even if some part of my son wants to comfort me, wants to go see his grandmother, his body may not follow that intention. He can understand what is being asked, care deeply about it, and still be unable to initiate the steps: stand up, walk to the door, leave the house he has not left in a year, get into the car. It is not a simple choice; it is a kind of cognitive and motor paralysis.

Grieving on a Different Timeline

I have also learned that my son’s grief does not follow the timelines or rituals that most people expect.

For him, loss — or even the anticipation of loss — does not necessarily show up as crying or talking about feelings. It shows up as needing to stay home, clinging to routines, or withdrawing even more into his familiar world. His grief might not appear in the moment everyone else is grieving. It might surface weeks or months later as changes in sleep, behavior, or skills.

This can be incredibly hard to reconcile with the way the world teaches us grief is “supposed” to look. But just because his mourning does not fit the script does not mean it is absent. It just means his nervous system processes loss in its own time and its own language.

Letting Go of “Proper” Goodbyes

Learning about these patterns — the hidden emotion, the overwhelm, the inertia — has been a painful wake-up call for me as a mother. It forced me to see that my crying and begging, while completely human and understandable, were actually making it harder for my son to move at all.

I am slowly learning to remove the demand. Instead of pleading with him to do the “right” thing, I try to lower the emotional volume in the room. I give him time, space, and quiet. I remind myself that his brain and body need safety before they can do anything new, especially something as huge as leaving the house.

Most importantly, I am working to release my own neurotypical expectations about what a “proper” goodbye to my mother should look like for him. If he cannot leave his safe space, then we will create other ways for him to connect with her — a video call, a recorded message, a drawing he makes that I bring to her.

None of these things will match the picture I once carried in my head of my son holding his grandmother’s hand at her bedside. But they are real, and they are his.

If you are loving or caring for an autistic person, I hope you can hold this close: an inability to do what the world considers a normal social gesture is often a neurological barrier, not a lack of love. Sometimes, the deepest empathy is not loud or visible. Sometimes, it lives in the silence, in the stillness, and in all the feelings that never quite make it to the surface.

Always remember tomorrow is never promised. Embrace and make time for the ones you love.

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#OurAutismStillHere

Written By Jennifer Mckinnish

Profound Autism Parent, Caregiver Advocate and Voice

My once of year information post..

Did you know that approximately 15% of individuals diagnosed with autism spectrum disorder (ASD) are considered to have profound autism? This designation signifies a more significant level of support needs, impacting communication, daily living skills, and overall independence. Understanding profound autism is crucial for fostering inclusive environments and providing effective, individualized support. This article delves into the complexities of profound autism, exploring its characteristics, diagnostic considerations, and the vital importance of tailored interventions.

What is Profound Autism?

Profound autism refers to a subset of individuals on the autism spectrum who exhibit the most significant challenges across core areas of development. These individuals typically require substantial and lifelong support to navigate daily life. The term emphasizes the depth of support needed rather than a distinct diagnostic category separate from ASD. It acknowledges that autism exists on a broad spectrum, with some individuals experiencing more intensive needs than others.

The diagnostic criteria for autism spectrum disorder, outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), focus on persistent deficits in social communication and social interaction, alongside restricted, repetitive patterns of behavior, interests, or activities. Profound autism is characterized by the most severe manifestations of these criteria, often accompanied by significant intellectual disability and limited verbal communication.

Defining the Spectrum: Levels of Support

The DSM-5 uses a severity rating system for ASD, which helps to delineate the level of support an individual requires. This system, using Levels 1, 2, and 3, provides a framework for understanding the varying needs within the autism spectrum.

Level 3: Requiring Very Substantial Support:** Individuals at this level demonstrate severe deficits in social communication skills, both verbal and nonverbal. They may have very limited initiation of social interactions and minimal response to social overtures from others. Their restricted and repetitive behaviors are highly interfering with functioning in all spheres.

Level 2: Requiring Substantial Support:** These individuals show marked deficits in social communication skills, evident even with supports in place. Their social interactions are limited. They also exhibit considerable distress and/or difficulty changing focus or behavior. Restricted, repetitive behaviors are also apparent and interfere with functioning to a significant degree.

Level 1: Requiring Support:** Individuals at this level have difficulty initiating social interactions and may show atypical or unsuccessful responses to social overtures. They may appear to have decreased interest in social interactions. Their restricted, repetitive behaviors result in noticeable impairments in functioning. They have difficulty switching between activities.

Profound autism generally aligns with individuals who would be classified as Level 3 by the DSM-5, often with co-occurring intellectual disabilities that further necessitate extensive support. The term “profound” is used colloquially and in some research contexts to highlight this highest level of need

Characteristics of Profound Autism

Individuals with profound autism often present with a complex profile of strengths and challenges. It is crucial to remember that each person is unique, and not all individuals will exhibit every characteristic.

However, common features often include:

Communication Challenges-Communication is frequently a significant area of difficulty. Many individuals with profound autism are non-speaking or have very limited verbal abilities. This can include:

Limited or absent spoken language:Reliance on non-verbal communication methods.

Difficulty understanding spoken language:** Challenges with receptive language skills.

Use of Augmentative and Alternative Communication (AAC):** Many individuals benefit greatly from AAC systems, such as picture exchange communication systems (PECS), communication boards, or speech-generating devices. The effectiveness of AAC depends on individualized assessment and training.

Echolalia: Repetition of words or phrases, which can sometimes be used for communication or self-regulation.

Challenges with pragmatic language:** Difficulty understanding social cues, inferring meaning, or using language in socially appropriate ways

Social Interaction Differences

Social interaction differences are a hallmark of autism, and these are often pronounced in individuals with profound autism.

Minimal interest in social engagement:** May appear to have little interest in interacting with peers or adults.

Difficulty forming relationships:** Challenges in initiating or maintaining social connections.

Atypical responses to social cues:** May not respond to greetings or social overtures in typical ways.

Preference for solitary activities:** Often find comfort and engagement in activities pursued alone

Restricted and Repetitive Behaviors (RRBs)

RRBs are a core diagnostic feature of autism and can be particularly prominent and impactful for individuals with profound autism.

Sensory sensitivities:** Extreme sensitivities or under-sensitivities to sensory input (lights, sounds, textures, tastes, smells, proprioception, vestibular input). This can lead to distress in certain environments or a seeking of specific sensory experiences.

Stereotyped movements Repetitive motor movements such as hand-flapping, rocking, or finger-flicking.

Insistence on sameness: Extreme difficulty with transitions or changes in routine, leading to significant distress.

Highly restricted interests: Intense focus on specific topics or objects, often to the exclusion of other activities.

Echolalia: As mentioned, this can also be considered a repetitive behavior.

Intellectual Disability

A significant proportion of individuals with profound autism also have an intellectual disability, meaning their cognitive functioning is substantially below average. This co-occurrence impacts learning, problem-solving, and adaptive skills.

Varied cognitive profiles:While intellectual disability is common, the specific cognitive strengths and weaknesses can vary widely.

Impact on adaptive skills:Challenges in daily living skills such as dressing, feeding, hygiene, and safety awareness.

Co-occurring Conditions

Individuals with profound autism are more likely to experience co-occurring medical and mental health conditions.

Gastrointestinal issues: Frequent digestive problems are reported in a significant percentage of autistic individuals.

Sleep disturbances: Difficulty falling asleep, staying asleep, or irregular sleep patterns.

Epilepsy: A higher prevalence of seizure disorders is observed.

Anxiety and depression: These mental health conditions can occur, though they may be difficult to diagnose due to communication challenges.

Attention-deficit/hyperactivity disorder (ADHD): Symptoms of ADHD can co-occur, impacting attention and impulse control.

Diagnosis and Assessment

Diagnosing profound autism involves a comprehensive evaluation by qualified professionals, typically including developmental pediatricians, child psychologists, and neurologists. The assessment process aims to identify the presence of ASD criteria and determine the level of support needed.

Key components of the diagnostic process include:

* **Clinical Observation:** Observing the individual’s behavior, communication style, and social interactions in a clinical setting.

Developmental History: Gathering detailed information from parents or caregivers about the individual’s developmental milestones, behaviors, and challenges from an early age.

Standardized Assessments: Utilizing tools like the Autism Diagnostic Observation Schedule (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R) to systematically assess ASD symptoms.

Cognitive and Adaptive Functioning: Administering intelligence tests (e.g., Wechsler scales) and adaptive behavior scales (e.g., Vineland Adaptive Behavior Scales) to evaluate cognitive abilities and daily living skills. This is crucial for identifying intellectual disability.

Medical Evaluation: Ruling out other potential medical conditions that might explain the observed behaviors and conducting genetic testing if indicated.

It is important to note that diagnostic criteria and assessment tools are continually evolving. Research continues to refine our understanding of autism and improve diagnostic accuracy.

Supporting Individuals with Profound Autism

Providing effective support for individuals with profound autism requires a highly individualized, person-centered approach. The goal is to maximize their quality of life, promote independence to the greatest extent possible, and ensure their safety and well-being.

Early Intervention and Education

Early intervention services are critical for children diagnosed with profound autism. These services can begin in infancy and continue through early childhood, focusing on developing foundational skills.

Individualized Education Programs (IEPs):** For school-aged children, IEPs are legally mandated documents that outline specific educational goals, services, and accommodations tailored to the child’s needs. These programs often focus on communication, social skills, academic support, and adaptive behavior.

Specialized Instruction: Educational settings for individuals with profound autism may involve specialized curricula, smaller class sizes, and highly trained staff.

Focus on Functional Skills:Education often emphasizes functional academics and life skills that promote independence in daily living.

Communication Strategies

Given the significant communication challenges, a robust communication plan is paramount.

AAC Implementation: Training for both the individual and their support network in using chosen AAC systems. Consistent and widespread use of AAC across environments is key to its success.

Visual Supports:Utilizing visual schedules, choice boards, and social stories to enhance understanding and predictability.

Speech Therapy: Working with speech-language pathologists to develop functional communication skills, whether verbal or through AAC.

Behavioral Support

Positive behavior support (PBS) strategies are essential for addressing challenging behaviors and promoting adaptive ones.

Functional Behavior Assessment (FBA): Understanding the function or purpose behind challenging behaviors (e.g., to gain attention, escape a task, access a sensory experience).

Behavior Intervention Plans (BIPs):Developing strategies based on the FBA to teach replacement behaviors and modify the environment to reduce the likelihood of challenging behaviors.

Focus on Reinforcement: Using positive reinforcement to encourage desired behaviors.

Daily Living Skills and Independence

Promoting independence in daily living skills is a key objective. This requires breaking down tasks into small, manageable steps and providing consistent support and practice.

Task Analysis: Deconstructing complex skills (e.g., brushing teeth, getting dressed) into sequential steps.

Prompting and Fading: Using various levels of prompts (e.g., verbal, gestural, physical) and gradually fading them as the individual gains independence.

Environmental Modifications: Adapting the home and community environments to support skill acquisition and independence (e.g., visual cues for hygiene routines).

Sensory Integration and Regulation

Addressing sensory needs is vital for comfort and participation.

Sensory Diet: Developing a personalized sensory diet that includes activities and strategies to help the individual maintain an optimal level of arousal and regulation throughout the day.

Sensory-Friendly Environments: Modifying environments to reduce overwhelming sensory input (e.g., using noise-canceling headphones, dimming lights).

Family Support and Respite Care

Families of individuals with profound autism often require significant support.

Parent Training and Education:** Providing families with information and strategies to effectively support their loved one.

Respite Care:** Offering temporary relief for caregivers, allowing them to rest and recharge, which is crucial for preventing burnout.

Support Groups: Connecting families with others who share similar experiences can provide emotional support and practical advice.

Research and Future Directions

Research into profound autism is ongoing, focusing on several key areas:

Understanding the Neurobiology:** Investigating the underlying brain differences that contribute to the more severe presentations of autism.

Developing More Effective Interventions:** Creating and evaluating novel therapies and support strategies tailored to the needs of individuals with profound autism.

Improving Diagnostic Tools:** Refining assessment methods to ensure accurate and early identification.

Longitudinal Studies:** Tracking the development and outcomes of individuals with profound autism over their lifespan to better understand trajectories and inform support.

A significant development in recent years has been the push for a more specific understanding and definition of “profound autism.” In 2023, a group of researchers proposed a formal definition, aiming to improve research, clinical practice, and policy. This definition emphasizes the presence of profound autism when an individual meets the DSM-5 criteria for ASD and also exhibits significant limitations in both intellectual and adaptive functioning, alongside minimal or no functional verbal communication.

[As reported by Spectrum News in 2023](https://www.spectrumnews.org/news/researchers-propose-definition-profound-autism/), this initiative seeks to better capture the needs of this population.

The Importance of Person-Centered Support

Ultimately, the most effective approach to supporting individuals with profound autism is to center their unique strengths, preferences, and needs. This means moving beyond a purely deficit-based model and recognizing the individual’s inherent worth and potential.

Respect and Dignity: Approaching every interaction with respect for the individual’s autonomy and dignity.

Individualized Goals:** Setting goals collaboratively (when possible) or based on thorough observation and understanding of the individual’s desires and needs.

Focus on Strengths: Identifying and building upon the individual’s strengths and interests.

Quality of Life: Prioritizing activities and experiences that contribute to the individual’s happiness and fulfillment.

Addressing Misconceptions

It is vital to address common misconceptions surrounding profound autism.

Not a Lack of Intelligence: While intellectual disability is often present, it is not synonymous with a lack of awareness, feeling, or potential. Individuals may process information differently.

Not a Lack of Desire for Connection: While social interaction may look different, the desire for connection and meaningful relationships can still be present. Support should focus on facilitating these connections in ways that are comfortable and accessible for the individual. Not Untreatable: While autism is a lifelong condition, interventions can significantly improve skills, reduce challenges, and enhance quality of life.

Conclusion

Profound autism represents the most intensive end of the autism spectrum, characterized by significant challenges in communication, social interaction, and adaptive functioning, often alongside intellectual disability. Understanding these complexities is the first step toward providing the appropriate, individualized support that enables individuals with profound autism to live fulfilling lives. Through early intervention, specialized education, tailored communication strategies, positive behavior support, and a steadfast commitment to person-centered care, we can foster environments where every individual, regardless of their support needs, can thrive. Continued research and a growing awareness of the unique realities of profound autism are paving the way for more effective and compassionate support systems for this important segment of the autism community.

Frequently Asked Questions

What is the primary difference between profound autism and other forms of autism?

The primary difference lies in the *level of support* required. Profound autism describes individuals on the autism spectrum who exhibit the most significant challenges, typically requiring very substantial, lifelong support across communication, social interaction, and daily living skills. This often includes co-occurring intellectual disability and minimal functional verbal communication, aligning with the DSM-5’s Level 3 severity rating.

Can individuals with profound autism communicate?

Yes, individuals with profound autism can and do communicate, though often not through spoken language. Many utilize Augmentative and Alternative Communication (AAC) methods, such as picture exchange systems, communication boards, or speech-generating devices. Their communication may also involve gestures, facial expressions, or vocalizations that are understood by familiar communication partners. The key is to identify and support their unique communication methods.

What are the biggest challenges faced by individuals with profound autism?

The biggest challenges often revolve around significant limitations in functional communication, leading to difficulties expressing needs and wants. Additionally, profound autism can involve substantial challenges with adaptive behaviors (daily living skills like dressing, hygiene, safety), sensory processing differences that can cause distress or overstimulation, and a higher likelihood of co-occurring medical conditions like epilepsy or gastrointestinal issues.

How can I best support an individual with profound autism?

Supporting an individual with profound autism requires patience, consistency, and a person-centered approach. Key strategies include: implementing and consistently using Augmentative and Alternative Communication (AAC) systems, utilizing visual supports and predictable routines, employing positive behavior support strategies based on understanding behavior functions, breaking down daily living skills into manageable steps, respecting sensory needs, and advocating for appropriate educational and therapeutic services. [The National Autistic Society](https://www.autism.org.uk/advice/older-adults/support-needs) offers extensive resources on supporting autistic individuals with diverse needs.

Is profound autism a separate diagnosis from autism spectrum disorder?

No, profound autism is not a separate diagnostic category from autism spectrum disorder (ASD). Instead, it is a descriptive term used within the broader ASD diagnosis to denote individuals who have the most significant support needs. It reflects the highest level of severity (typically Level 3 in the DSM-5) and often implies co-occurring intellectual and adaptive functioning limitations. Researchers are working towards a more formal definition to improve clarity and support.

What is the role of intellectual disability in profound autism?

Intellectual disability is frequently present in individuals identified as having profound autism. It signifies a significantly below-average cognitive functioning that impacts learning, reasoning, and problem-solving abilities. This co-occurrence significantly influences the types and intensity of support needed for daily living, education, and overall well-being. Understanding the interplay between autism characteristics and intellectual disability is crucial for effective intervention planning.

Key Takeaways

Profound autism refers to individuals on the autism spectrum requiring the most substantial support due to significant challenges in social communication, interaction, and adaptive functioning.

This designation often aligns with Level 3 severity in the DSM-5 and frequently co-occurs with intellectual disability.

Communication differences are pronounced, with many individuals being non-speaking and relying on **Augmentative and Alternative Communication (AAC). Restricted, repetitive behaviors (RRBs) and significant sensory sensitivities are common features.

Effective support is highly individualized and person-centered, focusing on strengths and promoting quality of life.

Key interventions include early intervention, specialized education (IEPs), AAC implementation, visual supports, and positive behavior support (PBS). Addressing co-occurring condition like gastrointestinal issues, sleep disturbances, and epilepsy is also important. Research is actively seeking to better define and understand profound autism to improve diagnosis, intervention, and policy.

[The CDC provides statistics on ASD prevalence](https://www.cdc.gov/ncbddd/autism/data.html).

Family support and respite care** are crucial for caregivers.

The goal is to empower individuals with profound autism to live **meaningful and fulfilling lives** to their fullest potential.

#Ourautismstillhere

By J.Mckinnish

My mom is in the ICU

Ten minutes away. That's nothing. That's one song on the radio. A stop sign and two traffic lights. For most people, that's nothing.

For me, it might as well be a thousand miles. I haven't been able to get to her.

I want to try to explain what that sentence actually means, because I know how it sounds from the outside.

People hear I can't get there and they assume something logistical. Traffic. A broken-down car. A scheduling conflict. Something fixable.

This isn't fixable.

My son doesn't leave the house.

I want to be precise about why, because the easy explanation — the one people reach for — is sensory. Overwhelm. Too much stimulation. And yes, autism is part of this. But that's not the whole story, and I'm done telling the partial version. The fuller truth is trauma.

Years of failed systems. Promises that didn't hold. Supports that showed up and disappeared. Environments that hurt him and people who didn't come back. His nervous system learned, slowly and then completely, that the world outside this door is not safe. And at some point, refusal stopped being a reaction and became a position. Permanent. Calcified.

He simply will not go.

And here's the part that makes this impossible in a way I can't soft-pedal: he is not a small child anymore. He is man-sized. He is strong. There is no redirecting him, no guiding him gently to the car, no "we'll get through this together" moment where I just hold the line long enough. When his answer is no, his answer is no in a way that my body cannot override.

I cannot carry him. I cannot move him. I cannot make this happen by force of will or love or desperation, no matter how much I have of all three.

This is where we are. This is what ten years of being let down by systems looks like in a body that grew up while the failures kept coming.

I've been navigating this for many years. Each year he grows and each year his refusal becomes more intense. Years of reconfiguring every single thing a person is supposed to be able to do — errands, appointments, bank runs, prescription pickups — around the reality that I have a profoundly autistic child who cannot reliably leave our home. Every year there are a long list of cancellations and workarounds and asking favors and apologizing and problem-solving and just... absorbing it. Accepting it as the shape of my life.

And I did accept it.

Because what's the alternative? You adapt. You find a way. You stop grieving what isn't possible and you focus on what is.

But this time feels different.

My mom is in the ICU, and I cannot get to her.

I can't pick up her prescriptions. I can't run the simple errands that would help my family manage while she's hospitalized.

I can't sit beside her bed. I can't hold her hand. I can't do the thing that daughters do when their mothers are sick.

And I am sitting with the weight of that in a way I haven't let myself sit with it before, because this time there's a clock I can feel. Her decline has been real and it has been rapid and something in me knows, even when I push the knowing away, that this is different. That the stakes are different.

For ten years I told myself: this is just our life. We make it work.

Right now I don't know how to make it work. I don't have a workaround for this one.

I don't have a village. I want to say that plainly because I think people assume caregivers have someone — a neighbor, a sibling, a friend who shows up, a system that sends help. I have none of that. I am one person, responsible for one profoundly disabled child, with no backup, no respite, no relief valve.

And the one place I turned to for help — the regional center — is the same system that responded to my trust with what I can only describe as a betrayal. When I disclosed sadness it was framed as mental instability, when I got to loud about what my son needed and what he wasn't receiving, stupidly admitting that I had an active civil rights case and they were included in it, with the slightest hope that maybe they would help us only to have a visit the following day ..yes they called CPS. And yes they later admitted it.

Let that land for a second.

I told them I was fighting for my son. I told them I was using every legal avenue available to get him what he needs. And the response was to send investigators to my home.

So now I don't trust them. I don't trust the system that is supposed to be our lifeline. I don't know who I can be honest with about our circumstances without that honesty being weaponized. I am a caregiver without a safety net, navigating a crisis, with the added burden of having learned that asking for help can cost me.

How is that supposed to work?

I'm genuinely asking. How are parents like me supposed to function when the system designed to support us treats our advocacy as a threat?

We have a Shriners appointment coming up.

I've been lying awake thinking about it. Not because I don't want him to get the care — I do, desperately. But because I don't know if he'll comply. I don't know if we'll get there. I don't know if this will be one of the times his body simply refuses, and we'll have to turn around, and I'll have to reschedule, and hold the disappointment and the exhaustion and the guilt that isn't even really mine to hold but that I carry anyway.

I plan for every contingency I can think of. I prepare him the best I know how. And then I wait to find out which version of the day we're going to get.

That's the thing people don't understand about profound autism caregiving. The uncertainty isn't a bad week or a rough patch. It's the permanent condition of our life. Every appointment, every outing, every errand exists in a state of maybe. And when your mom is in the ICU and your kid can't leave the house and the system has shown you its teeth, the maybes stop feeling manageable.

I don't have a neat ending for this one. I don't have the lesson or the silver lining. I'm in the middle of it, and the middle of it is hard, and I think sometimes the most honest thing I can do for this community is say: I don't have an answer right now.

What I know is this:

The isolation of profound autism caregiving is real. It is not metaphorical. It is not about attitude or mindset or whether you've found your support group. It is a physical, structural, daily reality — and it collides with the rest of life without asking permission.

My mom is ten minutes away. I love her. And I can't get to her.

That's not a failure of resourcefulness. That's what this life actually looks like, on the hardest days. And somebody needed to say it out loud.

If you're in this too — if you're caregiving in isolation, if you know what it is to have no one to call — I see you. You are not alone in this, even when it feels like you absolutely are.

Our Autism Still Here.

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Jennifer Mckinnish #ourautismstillhere

AUTISM PARENT,CAREGIVER, ADVOCATE AND HUMAN BEING

Im so sorry ma….

The Facts

Between 1998 and 2008, Jeffrey Epstein donated $9,179,000 to Harvard University to support faculty and research programs. The largest single gift — $6.5 million in 2003 — helped create Harvard's Program for Evolutionary Dynamics (PED), directed by math and biology professor Martin Nowak.

Office 610 in the PED building was known as "Jeffrey's Office." Epstein visited several times a year, scheduling meetings with Nowak and other academics. Even after Harvard quietly decided to refuse future donations following his 2008 conviction, Epstein continued finding ways to channel his wealth toward some of the university's most prominent scientists — including those doing pioneering work in genetics, a field that held deep personal interest for him.

After donating $200,000 to the psychology department, Epstein was appointed as a visiting fellow there — despite having no academic qualifications whatsoever. Between 2010 and 2018, as a registered sex offender, he visited PED offices more than 40 times. He had an on-campus office, a key card, and an after-hours access code.

Harvard only publicly reckoned with any of this after his 2019 arrest. The funds the university had received were later divided equally between My Life My Choice and Girls Educational & Mentoring Services — organizations that support survivors of human trafficking and sexual assault.

What Was He Actually Interested In?

This is where it becomes critically important for the disability and autism community to pay close attention.

Epstein was not a passive donor. Justice Department documents show he was fascinated with transhumanism — the use of cutting-edge technology, including genetic engineering and artificial intelligence, to advance the biology of the human race. Those records reinforce how seriously Epstein pursued these ideas, circulating them among a wide network of intellectuals who continued communicating with him long after he had pleaded guilty to charges involving child prostitution.

The DOJ files released in 2026 paint a picture of a man obsessed with genetic superiority. In addition to his $6.5 million gift to PED, he donated $20,000 to the Worldwide Transhumanist Association in 2011. He harbored openly racist beliefs — including the view that Black people's genetics made them less intelligent. In a 2016 email exchange with Noam Chomsky, he claimed that a "set of genes used for working memory" could be "found and adjusted." He was also in active discussions about funding a gene-editing company and had a longstanding preoccupation with designer babies.

His stated dream was to "seed" a "better" human race — drawing directly from the ideology of eugenics, the now-discredited movement that sought to shape humanity through selective breeding, targeting minorities, the poor, and the disabled as the "undesirables" to be eliminated.

Why This Matters Directly to the Autism and Disability Community

Let's be honest about what eugenics and transhumanism mean for families like ours.

When someone with the money and connections to shape Harvard's research agenda believes that genetics can be "fixed" to produce superior humans, our children — our profound, nonverbal, nonspeaking children — are exactly who people like Epstein consider the problem to be solved. Not people to be supported. Not lives to be valued. Problems. Genetic errors. Things to be engineered out of existence.

This is not abstract. Scientists may claim that Epstein's money did not cause them to compromise their standards — but there is broad evidence that funders' interests shape the work that gets done. The New York Times concluded that in this case, it led researchers to give serious consideration to what were described as Epstein's "half-baked scientific musings."

That means research priorities — what gets studied, what gets funded, what questions even get asked — were shaped at one of the world's most elite institutions by a man who wanted to eliminate genetic "imperfection." And the autism community, especially families of profoundly autistic individuals who cannot self-advocate, was never at the table.

The System That Let It Happen

When asked about relationships that often endured for years after Epstein's conviction, many academics offered the same response: he had money to give, and they needed it. In the brutally competitive world of research funding, professors rely not only on federal grants but on private donations they must secure themselves.

Epstein offered a shortcut — funding without the scrutiny and red tape attached to federal grants. He also offered entry into a world of wealth, power, and famous names that amplified his appeal and his access. "It blinded people," one scholar of philanthropy observed. "They saw the money coming, they felt that the risks were minimal."

This is exactly the system that fails families like ours every single day.

Federal funding for profound autism research is scarce. Private dollars fill the gap. But private dollars come with private agendas — and no one is required to tell you what those agendas are.

The Questions Nobody Is Answering

As advocates for the profound autism community, we are entitled to ask:

Who else is funding autism research — and what do they actually believe about our children? Are there other donors, foundations, or organizations currently shaping research priorities whose worldview treats our kids as genetic problems rather than human beings deserving of support?

Why does "cure" research continue to receive more funding than "support" research? Is it because some funders are motivated by elimination rather than accommodation? Those are two fundamentally different goals, and families deserve to know which one is driving the science.

What oversight exists? The Epstein affair exposed a much larger problem: when individuals can pick and choose lines of inquiry simply because they can pay for them, it undermines the integrity of the entire research enterprise. Harvard's own investigation confirmed that development officers knew about Epstein's continued involvement — and did not act.

Who is watching this now?

What We're Saying as a Community

This is not a conspiracy theory. This is documented fact and a set of legitimate, urgent questions.

A convicted sex offender with openly eugenicist beliefs had an office at one of the most prestigious universities in the world. He helped determine which research got funded and which scientists gained access to resources. He believed that people with genetic "imperfections" — his framing, not ours — were problems to be engineered away.

Our children exist in a world where research funding shapes policy, policy shapes services, and services determine whether our kids have a life worth living. We cannot afford to be naive about who is sitting at the table deciding what gets studied and why.

If the science that affects our children has been shaped — even partially — by people who see them as genetic mistakes, then the autism community, and especially the profound autism community, has not just the right but the obligation to ask:

Whose agenda is this research actually serving?

Sources: Harvard University Office of General Counsel Report on Jeffrey Epstein (2020) · Scientific American · CNN · Nature · The Boston Globe · The Globe and Mail · DOJ Released Files (2026) · Futurism · Live Science · Yahoo

#ourautismstillhere

Written by Jennifer Mckinnish

Our Autism Still Here exists because families like ours are consistently left out of the rooms where decisions get made. Paid subscribers keep this platform independent, consistent, and uncompromised.

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There is a moment most autism parents know by heart.

Your child is in a room that looks perfectly normal to everyone else. Maybe it's a grocery store. Maybe it's a birthday party, or a school hallway, or just a Tuesday afternoon at home when the neighbor decided to mow the lawn. And something — a sound, a light, a smell, a texture, something you cannot even identify — becomes too much. Not "a little much." Too much. The kind of too much that bypasses words and reasoning entirely and lands somewhere deep and primal.

And people around you look at your child, and then they look at you, and you can see them reaching for the wrong explanation.

This series exists because the wrong explanations have gone on long enough.

Over the next ten articles, we are going to go deep — into the neuroscience, into the research, into the real lived mechanics of what is actually happening inside the sensory system of an autistic person. Not the sanitized version. Not the "here are some tips for loud noises" version. The real one. The one that actually helps you understand your child, advocate for them, and stop second-guessing what you already know to be true.

We are starting at the foundation: the relationship between autism and Sensory Processing Disorder — what they share, where they diverge, and one piece of neuroscience I stumbled onto during my research that genuinely stopped me cold. I had been digging into the overlap between these two conditions when an AI model I was using surfaced a body of research I hadn't encountered before. It was about memory — specifically, about fundamental differences in how the autistic brain stores and retrieves information compared to a brain that has sensory processing differences alone. And it changed the way I understood everything.

But first, let's lay the groundwork.

What Is Sensory Processing Disorder?

Sensory Processing Disorder, or SPD, is a neurological condition in which the brain has difficulty receiving and responding appropriately to information coming in through the senses. Think of it like a signal problem. The information arrives — a sound, a touch, a smell — but somewhere between the input and the response, the brain either amplifies it, mutes it, or scrambles it.

The result is a nervous system that doesn't calibrate the way it's supposed to. The same fluorescent light that hums quietly in the background for most people can feel like a physical assault to someone with SPD. A tag on a shirt that a neurotypical person stops noticing within seconds might feel like sandpaper all day long. A food that tastes mild to most people might trigger a full gagging response. These aren't behaviors someone is choosing. They are the body's honest, automatic response to sensory input that the brain is not processing correctly.

SPD affects multiple sensory channels — not just the five senses most of us learned in school (sight, sound, touch, taste, smell), but also the lesser-known systems we'll be exploring throughout this series: the vestibular system (balance and movement), proprioception (the sense of where your body is in space), and interoception (the ability to read your own internal bodily signals, like hunger, pain, or the need to use the bathroom).

SPD can occur on its own, without any other diagnosis. Children and adults with SPD who are not autistic experience real and significant challenges in daily functioning — in school, in social situations, in sensory-rich environments. It is a legitimate condition that deserves recognition and support on its own terms.

But here is where things get important for our purposes.

What Is Autism — and Why Does Sensory Experience Matter So Much?

Autism Spectrum Disorder is a complex neurodevelopmental condition that affects how a person processes information, communicates, relates to others, and experiences the world around them. It is not a single thing. It is a spectrum — meaning it presents differently across individuals, with different strengths, different challenges, and vastly different support needs.

The autism spectrum is wide, and that width matters deeply in how we talk about sensory experience. Much of the public conversation about autism centers on high-functioning individuals — people who are verbal, who are mainstreamed into regular classrooms, whose autism might not be immediately apparent to a stranger. That conversation is real and valid.

But it is not the only conversation.

This series is written with the full spectrum in mind, including — especially — those with profound autism. Those whose support needs are significant. Those who may be nonspeaking or minimally verbal. Those whose sensory differences aren't quirks to accommodate but are central, defining features of their daily experience that require genuine understanding and systemic support.

In 2013, sensory reactivity was formally added to the diagnostic criteria for autism in the DSM-5 — the manual clinicians use to diagnose psychiatric and neurodevelopmental conditions. This was a meaningful shift. It meant that the medical community officially recognized what autism families had been living for decades: sensory differences are not a side effect of autism. They are part of it.

Research consistently shows that between 69% and 95% of autistic individuals experience significant sensory processing differences. Depending on the study and the population, some estimates go higher. What that means practically is simple: if your child is autistic, sensory experience is almost certainly shaping their world in ways that go far beyond what you can observe from the outside.

Where Autism and SPD Overlap

So if sensory differences are a core feature of autism, what is the relationship between autism and SPD? Are they the same thing?

No — but they are deeply intertwined, and understanding that distinction matters.

SPD and autism are separate neurodevelopmental conditions. A person can have SPD without being autistic. A person can be autistic with relatively minimal sensory processing differences (though this is less common). They are not synonyms.

But the overlap between them is significant and well-documented. The sensory processing difficulties seen in autistic individuals look very similar to those seen in SPD — hypersensitivity (overresponding to sensory input), hyposensitivity (underresponding), and sensory seeking (craving intense or repetitive sensory input). The experience of sensory overload, the challenges with sensory modulation, the behavioral responses to sensory triggers — all of these can appear in both conditions and can be difficult to distinguish on the surface.

This is exactly why the research I found so striking.

The Part Nobody Told Me About: When Memory Becomes the Differentiator

I want to be transparent with you about how I found this.

I was deep in research on the autism-SPD overlap when I asked an AI model a straightforward question about how the two conditions are similar. I expected the answer I usually get — sensory hypersensitivity, hyposensitivity, nervous system dysregulation. Standard territory. What came back instead was a thread I hadn't pulled before: that one of the documented neurological differences between the autistic brain and a brain with sensory processing differences alone appears to show up in memory. Specifically, in how and what the brain remembers.

I sat with that for a while. I pulled the research. And the more I read, the more I understood that this wasn't a footnote. This was a window into the architecture of the autistic mind — one that reframes a lot of behaviors that caregivers spend years misunderstanding.

Here is what the research says.

Two Memory Systems, One Brain

To understand what researchers have found, you need to understand that memory is not one thing. The brain runs multiple memory systems simultaneously, and they do different jobs.

Semantic memory is your memory for facts, concepts, and general knowledge. It's where you store information like "dogs are mammals" or "the capital of France is Paris" or every single fact your child has ever memorized about dinosaurs, train schedules, or a favorite video game. Semantic memory is impersonal. It doesn't need context. It doesn't require you to remember when or where you learned something — it just stores the information itself.

Episodic memory is your memory for personal experiences — specific events tied to a time, a place, and an emotional context. It's the memory that lets you remember what you had for lunch on your first day of school, or the look on someone's face when something important happened, or the sequence of events that unfolded on a particular afternoon. Episodic memory is contextual. It requires your brain to not just store information, but to embed it in a narrative.

Research shows a consistent and striking pattern in autism: semantic memory is largely intact, while episodic memory often operates abnormally.

Think about what that looks like in daily life. A child who can tell you every detail about how a steam engine works but cannot reliably tell you what happened at school today. A person who has memorized an entire movie script but struggles to describe what they did last weekend in sequence. A student who aces every vocabulary test but cannot explain why the story mattered or what the characters were feeling.

This isn't a gap in intelligence. It isn't lack of interest. It is a difference in which memory system the brain relies on — and how those systems communicate with each other.

What makes this particularly important from a developmental standpoint is that researchers believe this memory difference may emerge very early — potentially before other behavioral markers of autism are visible. Some researchers have raised the possibility that early abnormalities in episodic memory processing may actually play a role in shaping how autism develops over time. The memory system isn't just a symptom. It may be part of the foundation.

The Strength Nobody Talks About Enough: Rote Memory

Here is where the story gets more nuanced — and more hopeful.

While episodic memory is often impaired in autism, rote memory — the ability to memorize and precisely reproduce information — is frequently a genuine strength. Mechanisms like priming (where being exposed to something makes it easier to recognize or recall related information later) and cued recall (where a specific prompt helps retrieve stored information) remain highly functional in many autistic individuals.

This is the neurological engine behind what people often call "special interests." The brain locks onto information with extraordinary precision. It stores it reliably. It retrieves it accurately. This isn't incidental. It's a feature of the memory architecture.

The academic implications flow directly from this. Autistic students frequently excel in areas that depend on precise memorization — spelling, multiplication tables, historical dates, vocabulary, scientific terminology. The information goes in, it stays in, and it comes back out accurately. These students can appear to be academic superstars in certain subjects.

And then they hit a wall.

When subjects shift from memorization to flexible application — when science class asks not just "what is photosynthesis?" but "why does this particular plant struggle in this particular environment?" — the same student who aced every vocabulary quiz may suddenly appear lost. When social studies asks students to connect historical events to contemporary parallels, or when a writing assignment requires synthesizing information in a new way, the rote memory system isn't enough. The task now requires the brain to take memorized information and apply it flexibly, drawing connections across contexts — a process that requires exactly the kind of fluid, contextual thinking that is harder for the autistic brain.

This isn't a motivation problem. It isn't laziness. It is the difference between having an extraordinary library and being asked to write an original novel using the books in it.

Scripting, Conversation, and the Social Cost

The same dynamic shows up socially in ways that are deeply recognizable to autism families.

Many autistic individuals — particularly those who have developed verbal communication — rely heavily on scripted language. They absorb dialogue from movies, television shows, books, and previous conversations, and they deploy it in social situations. This is a sophisticated adaptive strategy, and for many autistic people it is the primary tool they have for participating in verbal interaction.

The challenge arises because real conversation doesn't follow a script.

Human social interaction is improvised. It shifts direction unexpectedly. It requires reading context, adjusting tone, responding to subtext, and generating novel language in real time. The rote memory system — as powerful as it is — was not built for this. And so what looks from the outside like "awkward" conversation, or "odd" responses, or "not listening," is often something much more specific: someone doing their absolute best to find a matching script for a situation that doesn't quite fit any of the scripts they have.

For families of nonspeaking or minimally verbal profoundly autistic individuals, this framework is equally important — and perhaps more so. When communication breaks down, the instinct of the people around the autistic person is often to assume absence: absence of thought, absence of understanding, absence of desire to connect. The memory research suggests something different. The thoughts are there. The understanding may be there. What is missing is not the interior life, but the output mechanism — the bridge between what is stored and what can be expressed in the unpredictable flow of real-time interaction.

Why the Autistic Brain Is Harder to Fool

One of the most remarkable findings in the memory research is one that sounds almost paradoxical at first: autistic individuals are significantly more resistant to false memories than neurotypical people.

Neurotypical brains are meaning-making machines. When they store memories, they don't just record what happened — they record the gist of what happened, filling in details based on context, expectation, and pattern-matching. This is actually a highly efficient system for most purposes. But its cost is that the brain will sometimes "remember" things that fit the expected pattern even if they never actually occurred. If you ask a neurotypical person to study a list of words related to "sleep" — pillow, dream, rest, tired, bed — many of them will later remember seeing the word "sleep" on the list, even if it wasn't there. The brain filled in the gap because it fit.

Autistic individuals are much less susceptible to this error.

The reason connects to a concept called weak central coherence — the tendency to process information in parts rather than assembling it into a unified whole. In many contexts, weak central coherence creates challenges: difficulty seeing the "big picture," difficulty understanding context, difficulty generalizing from one situation to another. But in the context of memory, it becomes a strength. Because the autistic brain is processing details individually rather than weaving them into a thematic narrative, it is less likely to fill in what "should" be there. It is more likely to remember what actually was there.

For families who have experienced situations where their autistic child insisted on a specific detail that everyone else was misremembering — or became distressed when someone's account of an event didn't match their own recollection — this is worth sitting with. They may not have been being rigid. They may have been being accurate.

What Changes When Support Needs Are Higher

There is one more piece of the memory research that I want to name directly, because it is the piece most relevant to families in the profound autism community — and the piece most often missing from mainstream conversations about autistic cognition.

Most of the research celebrating autistic memory strengths was conducted with higher-functioning individuals. The picture is more complex — and in some ways more challenging — for individuals with medium-to-low functioning autism.

Research on this population indicates that recognition memory — the ability to recognize familiar faces, familiar objects, familiar images — can be significantly impaired. This is not the same as the episodic/semantic split described above. This is a more fundamental disruption in how the brain registers and identifies even familiar input.

The practical implications are real and often unacknowledged. If a child with profound autism struggles to reliably recognize faces — including, in some cases, the faces of people they know — every social interaction carries additional cognitive weight. Every environment carries additional unpredictability. Safety, learning, and relationship-building all become more complex in ways that are not always visible and are rarely discussed in sensory or behavioral interventions.

This is not a reason for despair. It is a reason for specificity. The more precisely we understand what is actually happening neurologically, the better we can design support that fits — rather than forcing autistic individuals to fit support designed around a profile that isn't theirs.

What This Means for You

You did not come here for a neuroscience lecture with no exit ramp. So let me land this somewhere useful.

If your child has profound autism, or significant sensory processing differences, or both — here is what I want you to walk away with from this first article:

The sensory experiences your child has are real, neurologically grounded, and not within their control. The overlap between autism and SPD is significant enough that most autistic children are dealing with both simultaneously. And the memory architecture that underlies how your child learns, communicates, and experiences the world is fundamentally different from the architecture most educational and behavioral systems were designed around.

That is not a failure on your child's part. It is a design mismatch — between what your child needs and what most systems were built to provide.

Understanding the neuroscience is the first step toward being able to name that mismatch clearly, advocate against it persistently, and build something better in its place.

That is what this series is for.

Coming Up in the Series

In Article 2, we will move through the classic five senses — sight, sound, touch, taste, and smell — and look at exactly how sensory processing differences show up in each one. We will get specific about hypersensitivity, hyposensitivity, and why the same child can be oversensitive to some input and completely unresponsive to other input at the same time.

In Articles 3 and 4, we will go into the "hidden" senses — vestibular and proprioceptive — that most people have never heard of but that are deeply implicated in everything from classroom behavior to meltdowns to the need for "heavy work" and movement.

In Article 5, we will tackle interoception — the eighth sense, and the one that connects physical body signals to emotional regulation in ways that reframe a lot of what gets labeled as "behavioral" problems.

This is going to be a long series. It is going to go places that a lot of sensory content doesn't go. And it is going to keep coming back to the same thing: your child's experience is real, it is explainable, and it deserves to be understood at the level of depth it actually operates at.

Thank you for being here. Thank you for paying attention to the science so you can fight harder for the people who need you to.

Let's keep going.

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And that choice costs us more than you know.

You don't see what we saw at 6 AM this morning.

You didn't hear the meltdown over the wrong spoon, or the texture of a shirt that felt like sandpaper against our child's skin, or the way our kid rocked in the corner for forty-five minutes before we could even attempt to leave the house. You didn't watch us negotiate, recalibrate, breathe, and negotiate again — all before most people have poured their first cup of coffee.

But you see us in the grocery store. And you have thoughts.

We see them on your face.

The Stare Has a Language

We've become fluent in it. There's the quick glance — the one that lingers just long enough to clock that something is different — and then there's the one that stays. The one that travels from our child to us and back again, carrying a verdict that was decided before we even made eye contact.

That child is too old for that behavior.

Why don't they do something?

If that were my kid...

We know. We've heard every version of that sentence completed out loud by strangers who felt entitled to finish it. We have heard it in parking lots, at school pickup, in waiting rooms, at the park. We have heard it from family members who should know better and from strangers who definitely do not.

And here is what we need you to understand: we do not walk away from those moments feeling nothing. We walk away having made a choice. A hard, exhausting, daily choice to protect our child's dignity — and our own — by not becoming the version of ourselves that the moment calls for.

Because if we didn't have our child right there beside us? Some of those moments would end very differently.

We Were Not Always This Calm

This is the part nobody talks about.

Many of us came into this life already carrying something. Trauma that was handed to us before we ever held our child. Childhoods that were not safe. Systems that failed us. Relationships that broke us open in ways we're still piecing back together. And then we became caregivers — which means we became the person who is supposed to be regulated when everything is deregulated, the person who absorbs the chaos and somehow transforms it into calm.

That is not a personality trait. That is a skill we built from scratch, out of necessity, often without anyone teaching us how.

We have breaking points. We have been to them. Some of us visit them regularly.

There is a version of us that lives just beneath the surface — the one who would not have walked quietly away from the person in the checkout line who loudly suggested our child just needed discipline.

The one who would have met them at the bike rack. The one who grew up having to fight for themselves and never quite stopped being that person, even when the fighting looks different now.

We don't show you that person. But she is there. And she is exhausted from being held back, day after day, in a world that seems to have no problem being cruel to children who cannot defend themselves.

What You Call Spoiling, We Call Surviving

Let's clear something up.

When our child will only eat four things, we buy those four things. Every time. Without variation, without negotiation, without attempting to "expand their palate" on a Tuesday when we also have three appointments and a behavioral support form due.

We are not indulging a phase. We are preventing a hunger meltdown that will last six hours and leave both of us hollow. We are feeding a nervous system that experiences food differently than yours does — that can detect a brand change by taste, that gags at textures that seem unremarkable to you, that finds safety in sameness when everything else in the world feels like a live wire.

This is not weakness on our part. It is knowledge. Hard-won, specific, clinical knowledge about our child's body and brain that no stranger at the table next to us possesses — but feels perfectly comfortable commenting on anyway.

The same goes for the toys they've had for years. The worn stuffed animal. The specific brand of fidget that cannot be substituted. The blanket that has to come in the car even if we're only going around the block. These are not signs that we've failed to push our child toward growth. These are anchors. These are the things standing between our child and a world that overwhelms them on a good day.

We protect those anchors like our lives depend on them. Because in some ways, theirs does.

Yes, the Device Is On. No, We Are Not Bad Parents.

This one lives rent-free in our heads, so let's just say it.

We know the screen time guidelines. We have read the articles, sat through the meetings, nodded at the therapists. We know the research. We also know our child.

We know that the device is where our child finds the things that make sense to them — the shows that replay the same scenes in a way that is comforting and not chaotic, the music that regulates their nervous system in twenty seconds flat, the games that give them a win in a world where winning feels impossible, the videos of things that fascinate them without requiring them to mask or perform or hold it together.

The device is not a babysitter. For many of our kids, it is a friend. Possibly the most patient, accepting, non-judgmental presence in their life outside of us. It does not stare. It does not whisper. It does not make our child feel like a problem to be solved.

And honestly? We understand that feeling. We are also people who exist in a world that does not always make space for us, and we have found our own escapes — our own screens, our own corners of the internet where we are not caregivers first, just people for a few minutes. We do not have the luxury of pretending that technology is the enemy when it is also, sometimes, the only thing getting us through a hard afternoon.

What We Carry That You Cannot See

We carry the fear of what happens when we are not there.

Not in an abstract, distant way. In a visceral, middle-of-the-night, nauseating way. We think about the bully who hasn't found our child yet but might. We think about what our child would do if someone was cruel to them — whether they would understand it, whether they would tell us, whether they would internalize it in a way we'd never be able to undo. We think about the systems that will handle our child once they're adults, the institutions, the gaps, the people who will not know them the way we do and will not fight for them the way we do.

We think about what this world did to us when we were small and couldn't protect ourselves. And we look at our child — who is more vulnerable, who communicates differently, who trusts more freely, who has no armor yet — and something primal rises in us that has no clean name.

Love doesn't cover it. It's love and terror and grief and protectiveness and rage, all braided together, all present at once, all the time.

And then someone stares at us in the parking lot and we smile tightly and keep moving.

We Are Not Asking for Your Pity

We are asking for something smaller and harder: your pause.

The moment before the face you make. The breath before the comment. The choice to consider that you are looking at a fraction of a story that spans years and diagnoses and sleepless nights and advocacy battles and more love than you could probably imagine being asked to sustain.

You don't have to understand our life. You don't have to agree with our choices or recognize our expertise or even believe us when we say our child has needs you cannot see.

You just have to not make it worse.

Because we are doing everything we can to make it better — every single day, in every single moment, in ways that are invisible to you and absolutely everything to us.

We see you staring.

We're choosing not to say anything.

But we want you to know that we noticed. That it landed. That we absorbed it and kept walking, not because it didn't hurt, but because our child needed us to keep walking.

That's what we do.

We keep walking.

OurAutism Still Here — because we were here before you looked, and we'll be here long after you look away.

Written by Jennifer Mckinnish

Advocate, parent caregiver and Voice

State of Nevada Chair NCSAutism

National Grassroots Network

There is a particular kind of exhaustion that only parent‑caregivers of profoundly disabled children understand. It isn't just the sleeplessness, though that's real. It isn't just the physical weight of full‑body care, though that's real too.It's the exhaustion that comes from needing — desperately, urgently needing — to believe that someone in power sees you, only to be reminded, again and again, that you were never really the point. They consistently provide us with a vision of optimism and then take it back That is where I am right now. And I don't say that lightly

When They Said Tylenol, I Exhaled

When the conversation around acetaminophen and prenatal exposure finally started being taken seriously at a federal level, something in me — in a lot of us — loosened. Just slightly. Just enough to breathe.Because here's what most people don't understand about the profound autism community: we are not ideologically motivated. We are not looking for someone to blame so we can feel better about our lives.We are looking for answers — real ones, rigorous ones — because our children's bodies and minds are complex in ways that the “autism is just a different way of being” narrative was never designed to hold. We love our children completely. We also watch them suffer. Both things are true. And for years, we were told that asking why made us bad advocates. That questioning the narrative made us disloyal, ableist, or ignorant.So when the government started looking at environmental contributors — actually looking, not just gesturing — I felt something close to relief. I felt seen. That feeling didn’t last long.

The Silence That Followed

After the Tylenol conversation surfaced and stirred the water, the follow‑through dissolved. No sustained investigation. No meaningful policy movement. No funding announced.Just the initial ripple, and then — nothing.As if naming it was enough. As if our children's lives are satisfied by the mention of their suffering rather than the addressing of it.We know this pattern. We have lived this pattern. It is the cycle that parents like me have been running inside of for years: acknowledgment without action, visibility without resources, rhetoric without relief.I told myself not to read into it. I told myself to wait.

Then Came the Vaccine Questions

And then — the vaccine conversation came back into the room. Loudly, officially, unavoidably.I want to be careful here because this topic is a minefield, and the people who get blown up in minefields are always the ones who were just trying to walk forward. I am not here to tell you what caused my child's profound autism. I am here to tell you that when federal officials started asking questions that the scientific community had declared closed, the profound autism parent community had a complicated reaction that no one in the mainstream seems willing to report accurately.Some of us felt, again, a flicker of something. Not because we are anti‑science. Not because we are conspiracy theorists. But because we have spent years being told our questions weren’t allowed.When someone in power asked them out loud — even imperfectly, even controversially — part of us heard: you exist. Your child exists. Something happened and we are willing to say so publicly.I know how that sounds. I know the risks of that thinking. I am holding both the cautious mind and the grieving heart at the same time, the way I always have to.But I want to be honest: I felt acknowledged. Briefly. Cautiously. Against my better judgment.And

Then the Medicaid Cuts

I don't have the words for this that are clean enough to polish. So I'll say it plainly: my child's life — the physical continuation of it, the in‑home supports, the therapies, the medical equipment, the respite care that prevents me from complete collapse — runs through Medicaid.Not partially. Almost entirely.The same administration that was gesturing toward why our children are the way they are was simultaneously moving to gut the infrastructure that keeps them alive and cared for in their own homes.The same voices asking questions about what happened to our kids were preparing to make their present lives harder, more dangerous, more isolated, more institutionalized.I sat with that for a long time. I am still sitting with it.You cannot tell me you want to understand profound autism while simultaneously dismantling the systems that make survival possible for profoundly autistic people. You cannot tell me you care about our children and then propose legislation that will force families like mine to choose between care and catastrophe.The cognitive dissonance of it made me feel like I was losing my mind.

IACC Gave Me Something to Hold

The announcement of IACC — the Interagency Autism Coordinating Committee — being revived and potentially restructured gave me something I hadn't expected: a reason to pay attention again.IACC, when it functions, is supposed to bring together federal agencies, researchers, autistic people, and family members to coordinate a national autism research agenda. When it works — when it actually works — it is one of the only federal spaces where the profound autism community has even a seat near the table. Not always at it. But near it. I want to believe in IACC. I have reasons to. I have also been here long enough to know that committees are where urgency goes to be managed, where parents are thanked for sharing and then gently set aside while the real decisions happen elsewhere.And still. There was a meeting scheduled. There was structure. There was, at minimum, the appearance of a process. I let myself feel hopeful. Small, careful hope. The kind you hold in your cupped hands so it doesn't escape.And Then They Cancelled the MeetingThey cancelled the meeting. Just like that. No rescheduling announced. No explanation that satisfied. Just — cancelled.I cannot explain to someone who hasn't lived in this world what that specific feeling is like. It isn't just disappointment. It's confirmation of a fear you've been trying to outrun.It's the floor you were warned not to trust giving way anyway. It's looking at your child and knowing that the people who were supposed to convene on their behalf decided, at the last moment, that it wasn't a priority today.

It is never a priority today.Tomorrow, maybe. After the review. After the restructuring. After we clean up the corruption. After the reset.Always after.

The Word “Fraud” Is Being Used About Our Children

And now there is a new thread running through the political conversation about autism — the suggestion that the rise in diagnosis rates reflects, at least in part, fraud. That the numbers are inflated. That the system has been gamed.I need to stop here.My child did not receive a diagnosis because someone committed fraud. My child carries this diagnosis because their body requires around‑the‑clock care, because they are nonverbal, because they experience medical complexity that most people will never see up close, because our family's entire life is structured around their safety and survival.

There is nothing soft about this diagnosis in our home. There is nothing ambiguous about it. There is no spectrum of convenience being applied here.And yet — because diagnosis rates have risen, because the diagnostic criteria have broadened in ways that genuinely do raise legitimate research questions, because there are systemic flaws in how resources are allocated — the entire category of autism is now being painted with a fraud brush in public discourse.My child is in that category. When fraud becomes the framing, my child becomes the question mark. My family becomes the subject of suspicion. Our legitimacy becomes something we are expected to prove, again, to people who were never really convinced in the first place.

I have been advocating long enough to know that once the word fraud enters a policy conversation, cuts follow. Restrictions follow. Denials follow.And the people most harmed are always those with the most complex, most expensive, most visible needs — because they are the easiest to paint as the problem.

This is not hypothetical. This is the pattern.I have watched it happen.

What I'm Afraid This Actually IsI

want to say this carefully because I don't want to be wrong and I don't want to be unfair. But I also don't want to be silent about what my gut has been telling me through all of this.I am afraid this is theater.I am afraid that the Tylenol mention, the vaccine questions, the IACC revival, the talk of accountability and fraud investigations — I am afraid that all of it is scaffolding for a much simpler outcome: the dismantling of services, the cancellation of meetings, the defunding of programs, the gutting of Medicaid, all wrapped in the language of we had to burn it down to build something better.I have watched that rhetorical move made about other systems. I know how it ends.The burning happens. The building does not.And the people left in the rubble are always the most vulnerable. Always. Without exception.My child cannot wait for the rebuild. My child needs the infrastructure that exists right now. Imperfect as it is, broken as it is, infuriating as it is — it is what is keeping us here.

Personally: I Don’t Know Who to Trust Anymore

I need to say this last part quietly, because it is the most honest thing I have written.I don't know who to trust.I don't trust the political left to take profound autism seriously, because their framework of neurodiversity — which I respect in many contexts — has too often been weaponized to silence parents like me. To tell us our grief is ableism. To tell us our child's pain is a narrative we impose. To close the door on the questions we are asking.And I don't trust the political right to follow through, because the pattern of this administration — the hope extended, the acknowledgment offered, the meeting cancelled, the cuts proposed — tells me that our children are useful as a talking point and inconvenient as an actual responsibility.

I don't trust the research establishment to center the population that needs the most help rather than the one most palatable to study. I don't trust the advocacy organizations that take the funding and speak the language but somehow never quite arrive at the families most in need.For 9 years, I've been a voice centered around advocating for my child and for families like mine. I have given years, sleep, health, money, and pieces of myself I won't get back. I have shown up to every table I was invited to only to be talked over, ignored, or basically discredited by one thing or another.I admit I'm not polished when speaking publicly or when I lead with emotion — but that doesn't equal unintelligent.

I cuss. I ask questions. I call people out when shit just doesn't add up, because that's who I am. There’s no rulebook when you’re continually dismissed while trying to fight for human decency for your child.And I am sitting here, today, genuinely uncertain about who in this landscape is actually on our side. Not our side politically. Not our side ideologically. On our side in the most basic sense: willing to acknowledge what our lives are, what our children need, and what it will actually take to help us.I don't know who that is anymore.

What I Know For Sure

What I do know is this: I am still here. My child is still here.And whatever comes next — whatever political cycle, whatever policy reversal, whatever new committee is formed or cancelled or reformed — we will still be here. Needing the same things we needed before anyone started paying attention. Needing them with the same urgency we will need them after they stop.I am tired of our lives being a conversation someone else is having. I am tired of hoping and being wrong. I am tired of state agencies covering their own asses instead of serving the families they work for.And with that, I am not done. If my son is still in need, I will never be done.

Still here. Still fighting. Still asking what the hell is going on.

Written by Jennifer McKinnish

OurAutismStillHere | Still HereAdvocate and voice for my son and families alike — for the children and adults with profound autism and the caregivers who for too long have been silenced.

Nevada State Chair, NCSAutism Grassroots Network

A letter from inside a life most people will never understand.

By J. Rae McKinnish | OurAutismStillHere | Still Here

Let me say this clearly before anything else:

When a caregiver answers "How are you?" with honesty — when they post at 2 a.m., when their voice cracks in the middle of a sentence, when they sit in silence staring at nothing — they are not complaining about their child. They are not asking you to feel sorry for them. And above all, they are not placing blame on a child they love more than oxygen.

They are grieving parts of a life they once thought parenting would look like. They are trying to survive something the world has not fully acknowledged. They are asking if anyone else can hear them. And that distinction matters. Because for too long, families raising profoundly disabled children have been expected to either stay silent or make their pain more palatable for public consumption. Speak too honestly, and people recoil.

Speak too softly, and no one hears you at all. So this is not softness.

This is truth. We are not complaining about our child. We are testifying about a system that has failed us, a society that has looked away, and a life that was made harder than it had to be.

The Silence That Surrounds You

There is a particular kind of loneliness that belongs only to caregivers of profoundly disabled children. It is not the loneliness of being single, or moving to a new city, or losing a friendship. It is the loneliness of being completely unreachable.

For much of history, families raising children like ours were given no language, no community, and no dignity. Institutions took our children. Silence protected everyone but us. The movement toward de-institutionalization brought promises of inclusion and support — but the infrastructure those promises required was never fully built. We inherited the expectation of community care without the community to deliver it.

Your phone still buzzes. People still invite you to things. Parents age. Some pass away. Some fall ill. Some are lonely themselves, and you cannot be there in the way you want to be — not because you do not care, but because leaving requires a village you do not have.

It requires a babysitter who can handle a child who may be nonverbal, who may self-injure, who may need medical-level care every hour of every day. It requires trust you cannot build with a stranger in a single visit. It requires money you do not have. I say this from experience: when my father passed, it was excruciating not to be by his side until his last breath. I can only hope he knew how badly I wanted to be. So you stay home. Again. And the world keeps moving — brunches and promotions and weddings and vacations — and you watch it through a screen like someone watching a parade through a window that does not open.

Most of us are doing this alone. Single parents. No backup. No shift change. No one to hand the hard moments to. Every meltdown, every injury, every sleepless night — it is yours. All of it. Every single day.

The public still romanticizes "the village," but for many of us, it is gone. Community has been replaced with referrals. Support has been replaced with waitlists. Human presence has been replaced with paperwork. And for families like ours, ordinary help is not enough. These are not casual childcare needs. So families disappear from public life, and people mistake that disappearance for disengagement. It is not disengagement. It is survival.

What It Costs to Love This Much

Before this life, many of us were functioning, contributing adults. We had careers. We were climbing. We had retirement accounts, ambitions, and plans. We paid taxes. We volunteered. We showed up.

Then profound disability arrived, and the economy of our lives collapsed overnight.

Legislation like the Individuals with Disabilities Education Act promised appropriate public education for every child. What it delivered for many profoundly disabled children has been a revolving door of inadequate placements, staff who are not trained, and services that fall catastrophically short of what the law intended. Most school systems are not equipped. Many of us are turned away, denied, redirected. We become the teacher, the therapist, the nurse, the aide, the behavioral support, the crisis manager — all at once, all unpaid.

Daycare is not an option. Traditional employment becomes impossible when your child requires continuous supervision that no facility is prepared to provide. The job disappears. Then the savings. Then the stability.

And what replaces it? Welfare. Medicaid. Whatever scraps the system will offer — applied for on a broken phone, approved after months of waiting, rarely enough to survive on.

We are not lazy. We are not irresponsible. We are not failures.

We are people who gave everything to care for a child the world did not build infrastructure for.

That unpaid labor has always existed, but it has rarely been named for what it is: skilled, relentless, invisible labor. And when it consumes a parent's entire capacity to earn, poverty is manufactured around that family. Not because they gave up, but because they refused to.

We still get looked at sideways when we ask for help. We still feel shame asking family for money. We are grown adults who were once independent and capable, now explaining why we cannot pay a bill, watching judgment flicker across someone's face before they hand us twenty dollars.

That look stays with you.

Our Health Is the Last Thing That Matters — Until It's the Only Thing

Caregivers do not get sick days. There is no calling in. There is no one to take over. So we push through fevers, infections, injuries, and mental health crises of our own — because the alternative is no one being there for our child.

Sleep is not a given. It is a hope.

Many of our children do not sleep through the night, and neither do we. Research on chronic sleep deprivation reads like a list of things slowly happening to caregivers everywhere: cognitive decline, immune dysfunction, emotional dysregulation, cardiovascular damage. We know this. We keep going anyway because there is no substitute caregiver waiting at the door.

Our own doctors become distant acquaintances. Appointments we cancel. Prescriptions we cannot afford. Mental health care we are told to prioritize while simultaneously having zero time, zero money, and zero energy to pursue it.

We will deal with ourselves later. Later rarely comes.

And the advice to "practice self-care" often lands like an insult. You cannot self-care your way out of structural abandonment. You cannot positive-think your way into respite, safe staffing, and functioning support systems.

The problem is not poor coping. The problem is structural neglect.

Watching Your Child Hurt Themselves, and Being Powerless

This is the part people cannot imagine unless they have lived it. You watch your child — the person you would throw yourself in front of a car for — hit their head against the wall. Scratch their own skin until it bleeds. Bite their hands. Slam their body against the floor. You watch pain cross their face and know they cannot explain it, cannot reach through it, cannot be talked out of it.

And you hold them. Or you create a safe space. Or you do exactly what the therapist said, or what experience taught you, or what works this week even though it did not work last week.

And you hold yourself together because falling apart is not an option when someone needs you to stay calm. The fear that lives in those moments becomes permanent. The fear of what they might do to themselves when you are not watching. The fear that one day it will go further than you can manage.

That fear does not leave when the moment passes. It waits. And the heartbreak — the specific heartbreak of watching someone you love be in pain you cannot fix — never fully leaves either. It simply becomes part of who you are.

The Trauma of a Therapy Table

There is something that does not get discussed enough in caregiver spaces, because it sits at the intersection of love and grief and impossible choices.

Strapping a child down for a medical or therapy appointment is traumatic.

Not just for the child. For the parent holding them. For the parent who was told this is necessary. For the parent who has to look into their child's terrified eyes and know that the very act meant to help them is something their child experiences as threat, as betrayal, as pain.

We walk into those appointments carrying the hope that something will finally help. We walk out carrying something else entirely — something that does not have a clean name but lives in the body for a long time after.

Compliance-based approaches have long been the default model for treating profoundly disabled children. The history of that model is complicated, and in many cases, deeply harmful. The idea that a child must be made still, made manageable, made cooperative through force — even gentle force — in order to receive care, has caused generations of disabled individuals and their caregivers profound harm.

We are not saying do not seek treatment. We are not saying give up on therapy. We are saying that a child who is terrified is not learning. A child who is physically restrained is not building trust. And a parent who has to participate in that process carries it home, carries it into every appointment after, carries it into the quiet moments when the house is still and they sit with what they have had to do in the name of help.

That experience belongs in this conversation. Because it is one more thing caregivers absorb without acknowledgment. One more thing the system delivers and then moves on from, while the family carries it forward.

Beneficial care should not require a child to be held down and a parent to look away.

The Trauma We Carry, and the Grace We Carry It With

What many caregivers experience has a clinical name: caregiver trauma, often consistent with PTSD.

The hypervigilance. The startle response. The intrusive memories. The nightmares. The flinching at certain sounds. The inability to rest even when rest is technically available because your nervous system no longer believes you are safe enough to do so.

It is real. It is documented. And it is still almost entirely unaddressed.

What many caregivers experience at home can also resemble domestic violence in physical impact, even when there is no malice behind it. Our children, through pain, dysregulation, and neurological reality, sometimes hurt us. Punches. Bites. Scratches. Hair pulls. Objects thrown.

And we take it with love. With understanding. With grace, because we know our children are not cruel. We know they are suffering.

But our bodies do not always know the difference between intentional violence and unintentional harm. The bruises are the same. The pain is the same. The exhaustion of being someone's emotional regulation target, day after day, is the same.

We do not talk about this enough because we are terrified of how it sounds. Terrified of the judgment. Terrified of what someone will do with that information.

And that fear is justified — because sometimes, instead of help, what arrives is an investigation.

Being Investigated for Loving Too Hard

There are caregivers who have had child protective services knock on their door while they were simultaneously the most devoted parents in the building.

There are caregivers investigated for bruises that came from their child's own hands, for homes in active crisis, for circumstances that cannot be explained in forty-five minutes. The system designed to protect children can, in its bluntness, traumatize the very people who are those children's fiercest protectors.

The experience of being investigated when you are already hanging by a thread is its own kind of violence.

It tells you that everything you are doing is still not enough. That the sacrifice is not seen. That the system that is supposed to support you now suspects you. It plants doubt in the only place where you need certainty: your belief that you are doing the right thing.

Many caregivers never fully recover from that kind of scrutiny. It becomes another layer of trauma carried quietly. And it is one of the reasons many parents stop telling the full truth — not because the truth does not matter, but because honesty has become dangerous.

The Person You Were Is Still in There, Somewhere

You had dreams. A version of your future that included things for yourself — a career, creativity, rest, a sense of identity outside the role you now inhabit.

Caregiving has a way of consuming everything. The self you were building gets set aside — at first temporarily, then indefinitely. You stop finishing your own sentences. You stop pursuing your own interests. You become so practiced at putting yourself last that you forget you were ever first.

And the world keeps going. Colleagues get promoted. Friends get married, travel, build lives. Their timelines progress while yours calcifies around one enormous responsibility. We grieve this quietly, because saying it aloud can feel like betrayal — as though mourning your own lost life means rejecting the child your life was rearranged for. It does not. Grieving what you lost is not the same as rejecting who you love. Both can be true. We can love fiercely and still mourn honestly.

Why We Advocate — Without Agenda

People sometimes ask why caregivers are so vocal. Why the posts. Why the essays. Why the 2 a.m. captions about exhaustion and heartbreak.The answer is simple: because silence has not helped. We are not performing suffering. We are not looking for a debate about terminology or what makes other people comfortable.

We are hoping that somewhere in this enormous world, there is still an answer we have not found. A resource we missed. A policymaker who reads one honest sentence and decides to do something useful. We speak because love without advocacy becomes silence. And silence has protected the wrong people for far too long.

A law is not a nurse. A policy is not a trained aide. Awareness is not respite. Inclusion language is not infrastructure.

Families do not need more slogans. They need help. Real help. Reliable help. Affordable help. Ongoing help.

Respite Sounds Like Relief. It Rarely Feels Like It.

When respite care is offered — and it is not offered often enough, or funded well enough — the response from caregivers is not always immediate gratitude. Sometimes it is hesitation. Sometimes it is refusal.

What people do not understand is what it takes to trust someone with your child. A child who cannot tell you what happened. A child whose needs are complex, specific, and non-negotiable. A child who may be harmed by an untrained hand or terrified by an unfamiliar face.

Building that trust requires time and consistency — the very things most respite systems fail to provide. So we decline, and we are seen as refusing help. We are not refusing help. We are protecting the only person in the world we are certain we can protect.

The Deepest Fear Has No Clean Answer

We would die for our children. That is not rhetoric. It is a basic fact of how we love. But our deepest fear — the one whispered in the dark, the one that rarely makes it into public posts — is what happens to our child if we go first.

Who will love them the way we do? Who will know the folded blanket, the pain sound, the hunger sound, the sensory trigger, the exact tone that calms, the warning signs nobody else notices?

Who will stay? The honest answer, for many of us, is: we do not know.

And so some of us carry a quiet, terrible wish — to live one minute longer than they do. Not because we want them to go first. But because we cannot bear the alternative. We cannot leave them in a world that has not yet proven it will care for them.That is not darkness. That is love with nowhere else to go.

We Are Still Here! We are not broken. We are bending — but we have not broken.

We are not complaining about our children. We are testifying about a system that has failed us, a society that has looked away, and a life made harder than it had to be by choices that were never ours to make. We were functioning, contributing adults who became extraordinary caregivers overnight — without training, without compensation, without a safety net.

And we are still here. Still fighting. Still loving. Still hoping.

If you see us, say something. If you have the power to change something — a policy, a budget line, a law, a service system, a conversation — then do it.

We are not asking for pity. We are asking to be seen.

— J. Rae McKinnish | OurAutismStillHere | Still Here

What would change if society stopped praising caregiver endurance and started building systems that made endurance less necessary?

STILL HERE

— #OurAutismStillHere —

Vol. 1, No. 1          Written from Nevada — Speaking for Every State — Independent Publication          February 17, 2026

IN THIS EDITION

From the Desk of Jennifer R. McKinnish  ........................................  

Article 1: The Invisible Workforce  ...............................................  

Article 2: Not All Autism Looks the Same  ...................................  

Article 3: The IEP Battlefield  .....................................................  

Article 4: A Model That Could Change Everything  ....................  

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026          

FROM THE EDITOR

FROM THE DESK OF JENNIFER MCKINNISH

Welcome to the first edition of Our Autism Still Here.

This newsletter was not born in a boardroom. It was born at a kitchen table, at an hour most people are sleeping, by a mother who has learned that if she does not speak — her son cannot. B is eleven years old. He has profound autism. He is nonverbal. And he is the reason every word in these pages exists.

I am Jennifer R. McKinnish — Nevada State Chair for the NCSAutism Grassroots Network. I want to be clear: this newsletter is my own independent work. It does not represent NCSAutism or any affiliated organization. I share my title not to claim authority, but because the work I have done in this community is the credential that earns me the right to say what I am about to say.

This is not a newsletter about inspiration. It is not about celebrating how far we have come. It is about how far we still have to go — and being honest, specific, and fearless about what is standing in our way.

Inside this edition you will find four articles that I believe need to be read by every parent caregiver, every policymaker, every school administrator, every university, and every employer who has ever wondered what the autism community actually needs. Not what they imagine it needs. What it actually needs.

And to the parent reading this at their own kitchen table — exhausted, scared, invisible, and wondering if anyone sees them:

I see you. You are not alone. And your child's life matters as much as any other.

That is why this newsletter exists. Let's get to work.

Jennifer R. McKinnish

Nevada State Chair, NCSAutism Grassroots Network

Independent Advocate  |  Parent Caregiver  |  Written from Nevada, Speaking Nationally

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026          

ARTICLE ONE

The Invisible Workforce

What no one tells you about the caregivers holding the autism community together — and what needs to change now.

When most people think about autism caregiving, they picture love. Dedication. Sacrifice. What they don't picture — what they rarely stop to ask about — is what happens to the caregiver's life.

Here is what happens: you leave the workforce. Not because you want to. Not because you are lazy or unambitious. You leave because you have no choice.

You leave because your child's school calls — again. Because there are no available respite care workers in your county. Because the bus didn't show up. Because your child had a medical crisis at 7 a.m. and you spent the rest of the day managing the fallout. Because no employer — not yet — has figured out how to accommodate the reality of raising a profoundly disabled child alone.

"It's not about complaining about our kids. It's the reality that there is no help available — and that parent caregivers need and want to be financially secure too."

And while you are doing all of this — every single day, without breaks, without backup, without a paycheck — the clock is ticking on your Social Security credits. Your career gap is widening. Your retirement is disappearing. And the systems that are supposed to support you are penalizing you for trying to survive.

The Skills We Carry

Here is what the employment gap on a caregiver's resume does not show:

Medical documentation and records management — tracking diagnoses, medications, therapy notes, specialist communications, and insurance claims across multiple providers simultaneously.

Scheduling and coordination — managing a calendar of therapies, school meetings, medical appointments, and government program requirements that would overwhelm most office managers.

Accounting and budget management — navigating SSI asset limits, Medicaid eligibility windows, and household finances with zero margin for error.

Advocacy and research — learning federal disability law, state waiver programs, IEP rights, and agency processes from scratch, then applying that knowledge in high-stakes meetings.

Email and communications management — maintaining correspondence with schools, agencies, medical teams, legal advocates, and government offices, often simultaneously.

Crisis management and rapid problem solving — responding calmly and effectively to behavioral, medical, and logistical emergencies with no support team.

Automation and technology — proficiency with assistive technology platforms, health management apps, and AAC communication tools.

These are not soft skills. These are professional competencies — performed daily, without pay, without recognition, and without a title on a resume.

The System That Keeps Us Trapped

SSI income and asset limits punish families for attempting to save or earn more. The Medicaid cliff means earning a few hundred dollars more per month can result in the loss of thousands of dollars in services a child depends on for survival. And every year spent out of the workforce is a year without Social Security credits — leaving caregivers heading toward retirement with nothing of their own, after decades of uncompensated labor sustaining another person's life.

In state after state, reliable respite care for children with profound autism is critically scarce. Without someone to care for your child, you cannot work. It is that simple — and that impossible.

An Open Invitation to Employers

There is an entire workforce of skilled, experienced, creative problem-solvers who want to work. We managed crises before our morning coffee. We negotiated with government agencies before lunch. We maintained meticulous medical records, coordinated complex care teams, and never missed a deadline that mattered — because the deadline was our child's life.

What we need is flexibility. Not charity — flexibility. Remote work. Adjustable hours. The understanding that an employment gap is not a character flaw when it represents years of invisible, essential labor.

"We are not unemployable. We are underestimated. And we are ready — if you are."

If you are an employer offering remote or hybrid roles with flexible scheduling, we want to hear from you. PM me directly. This community is your next great talent pool — you just haven't been introduced yet.

What We Are Asking Policymakers to Do

Reform SSI asset and income limits so caregivers are not punished for attempting to save or earn.

Expand Medicaid waiver eligibility so more family caregivers can be compensated for the care they already provide.

Invest in respite care infrastructure nationally so caregivers have the support they need to rejoin the workforce.

Explore caregiver credit programs that recognize unpaid caregiving as Social Security-eligible labor. Partner with employers to create flexible, remote-friendly hiring pathways for caregivers returning to work.

Our children's futures matter. Our lives matter. These are not separate conversations.

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026          

ARTICLE TWO

Not All Autism Looks the Same

On the levels crisis, diagnostic failure, intra-community harm, and the families being left behind by the very movement that should protect them.

Autism Spectrum Disorder is one of the most diverse neurological diagnoses in existence. It encompasses individuals who are self-sufficient professionals and individuals who require around-the-clock care for every basic function of daily life. It includes people who communicate fluently in multiple languages and people who have never spoken a single word.

The fact that we place all of these individuals under one diagnostic umbrella — and then build policy, funding, and public narrative around the most visible and highest-functioning end of that spectrum — is not just a failure of imagination. It is a systemic failure with life-altering consequences for the families no one is looking at.

What the Media Gets Wrong

The public face of autism in media, advertising, and advocacy campaigns is overwhelmingly Level 1 and Level 2. It is the autistic college student. The quirky genius. The person who thinks differently and just needs a little understanding. These stories are real and they matter. But they are not the whole story.

Profound autism — Level 3, nonverbal, requiring full-time support — is nearly absent from public discourse. And when it does appear, it is often sanitized, inspirational, or so brief that it fails to communicate the actual reality of what these families live every single day.

The result is a public, a legislature, and a funding apparatus that does not understand what profound autism actually demands. And families like mine pay the price for that misunderstanding every single day.

The Comorbidity Crisis No One Is Talking About

Profound autism rarely arrives alone. For many children and adults at the most intensive end of the spectrum, the diagnosis comes with a constellation of co-occurring conditions that compound the challenge of daily life and care exponentially:

  Mental health comorbidities — anxiety, OCD, PTSD from sensory trauma, depression, and mood dysregulation are common and frequently undiagnosed or undertreated in nonverbal individuals because standard assessment tools require verbal communication.

  Physical limitations — motor challenges, seizure disorders, gastrointestinal conditions, sleep disorders, and immune system differences are disproportionately present in profoundly autistic individuals and require specialized medical attention that the system is not consistently equipped to provide.

  Sensory processing differences — for children with profound autism, sensory input is not a preference issue. It can be a medical crisis. Environments that are tolerable for neurotypical children — including most school buildings — can be genuinely dangerous for a profoundly autistic child whose nervous system cannot regulate incoming stimulation.

These are not peripheral concerns. They are central to understanding what this population needs — and they are almost entirely absent from the policy conversations that determine what resources get built and funded.

The IQ Testing Problem

Standard intelligence testing relies on verbal communication, sustained attention, and the ability to respond to timed prompts in an unfamiliar environment. For a nonverbal child with profound autism, these conditions may make meaningful assessment functionally impossible.

Yet IQ scores are frequently used as gatekeeping criteria for services, educational placements, and program eligibility. When a nonverbal child cannot demonstrate their cognitive capacity through a verbal test, they are often assigned scores that do not reflect their actual intelligence — and then denied services or placed in inappropriate settings on the basis of those inaccurate scores.

If IQ assessment is to be used as criteria for any purpose involving this population, the field must develop and mandate the use of nonverbal, adaptive assessment tools that can actually capture what these children know and are capable of. Until that happens, we are making consequential decisions about children's lives based on data we know is flawed.

The Case for Diagnostic Subcategories

The current ASD diagnostic levels — Level 1, 2, and 3 — were intended to capture the breadth of the spectrum. 

In practice, they have not created the differentiation necessary to drive targeted policy, funding, or research. A Level 3 designation covers an enormous range of presentations and support needs, and it does not adequately communicate what profoundly autistic individuals and their families actually require.

We are calling for serious consideration of the following diagnostic subcategories to be developed, validated, and formally recognized:

PROPOSED DIAGNOSTIC SUBCATEGORIES

Profound Autism — a distinct classification separate from the broader ASD Level 3 designation, recognizing individuals who require full-time support across all domains of daily functioning.

Nonspeaking/Nonverbal Autism — formal recognition of nonspeaking as a distinct clinical characteristic with specific implications for assessment, communication supports, and educational placement. Complex Autism — recognition of autism presenting alongside significant co-occurring conditions including but not limited to epilepsy, severe mental health comorbidities, and significant physical limitations.

Supported Decision-Making Classification — a tier that formally acknowledges full-dependency care needs and the legal and logistical implications for families, guardians, and systems of care.

Separate Research and Funding Classification — a designation that ensures profound autism receives dedicated research attention and funding streams independent of the broader ASD umbrella, where resources have historically concentrated at the higher-functioning end of the spectrum.

These are not proposals to diminish or segregate any part of the autism community. They are proposals to build a system precise enough to actually serve everyone in it.

On Intra-Community Harm: Naming What Is Happening

There is a conversation that happens in autism advocacy spaces that needs to be addressed directly and without apology.

Parent caregivers of profoundly autistic, nonverbal children are routinely labeled ableist by members of the autistic self-advocacy community for speaking on behalf of their children. They are told their children can speak for themselves. They are told that seeking intensive supports or medical interventions is harmful. They are dismissed, ridiculed, and silenced — often publicly — by individuals who share the same diagnostic label as their child but whose lived experience and support needs bear little resemblance to that child's reality.

This newsletter will say plainly what many are afraid to say:

"What's wrong is wrong — regardless of who is doing it. Bullying and discrimination do not become acceptable because the person engaging in them carries the same diagnosis as the person they are targeting. No 

one's needs sit above another's. That principle applies everywhere — including within this community."

A parent who is the sole voice for a child who cannot speak is not an ableist. They are a caregiver doing the most essential work of advocacy — making sure a voiceless person is seen, heard, and served by systems that would otherwise ignore them entirely.

Disagreement within a community is healthy. Bullying is not. Dismissing the reality of profound autism because it is inconvenient to a particular narrative is not advocacy. It is erasure. And the families on the receiving end of that erasure deserve better from a movement that claims to fight for inclusion.

This is not an attack on the autistic self-advocacy community. It is a call for the same standard of dignity and respect that community demands for itself — extended without exception to every family in this space. To the Parent Who Has Been Called Ableist for Speaking Up

I see you.

I know what it costs to be the voice of a child who cannot speak. I know the exhaustion of fighting systems that ignore you and communities that dismiss you. I know what it feels like to advocate with everything you have and be told that advocacy is the problem.

You are not the problem. You are the solution — the only solution your child has in rooms that were never designed with them in mind.

Keep going. You are not alone. And what you are doing matters more than anyone who has never lived your life can possibly understand.

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026          

ARTICLE THREE

The IEP Battlefield

What schools don't tell you, what you have the right to demand, and why the current system is failing the children who need it most.

The Individualized Education Program — the IEP — is a legally binding document. It is supposed to guarantee every disabled child a free and appropriate public education tailored to their specific needs. In practice, for families of profoundly autistic children, it is often the beginning of a years-long battle that parents were never told they would have to fight.

Schools are under-resourced, under-trained, and operating under mandates that were not written with profound autism in mind. The result is a system that frequently fails the children who need the most support — and a system that counts on parents not knowing their rights.

What Schools Are Not Required to Tell You

Schools are required to provide a free appropriate public education. They are not required to provide the best possible education. That distinction — between appropriate and best — is one that schools rely on and parents rarely know exists until it is too late.

Here is what many school districts will not volunteer:

You have the right to request an Independent Educational Evaluation (IEE) at public expense if you disagree with the school's assessment of your child.

You have the right to bring an advocate — including an attorney — to every IEP meeting. You do not have to face the table alone.

You have the right to request that any service your child needs be included in the IEP — and the school must either provide it or explain in writing why they are denying it.

Prior Written Notice is required any time the school proposes to change, refuse to change, or initiate any aspect of your child's education. If you are not receiving this documentation, the school is out of compliance.

You have the right to record IEP meetings in most states with proper notice. Know your state's law — and use it.

Related services — including speech therapy, occupational therapy, physical therapy, and behavioral support — are required components of an appropriate education for children who need them. Frequency and duration must reflect the child's needs, not the school's staffing constraints.

Why Schools Are Not Safe for Profoundly Autistic Children

For children with profound autism, the standard school environment presents risks that the system was not designed to address and frequently does not acknowledge.

Sensory environments in most school buildings — fluorescent lighting, crowded hallways, unpredictable noise, transitions between spaces — are inherently dysregulating for children with significant sensory processing differences. For a nonverbal child who cannot communicate distress, this dysregulation can escalate quickly and without warning.

Staffing ratios in most special education settings are not sufficient to safely support children who require oneto-one or near-one-to-one attention. Restraint and seclusion — practices that have caused serious injury and death — continue to be used in schools across the country, disproportionately on disabled students.

The tragedies happening within school settings for this population are not isolated incidents. They are the predictable outcome of placing children with profound, complex support needs into environments that were never built for them — and then failing to provide the staffing, training, and infrastructure that would make those environments safe.

If the goal of special education is inclusion, then inclusion must mean something real. It cannot mean placing a profoundly autistic child into an environment that harms them and calling it progress.

What You Have the Right to Demand

A placement that is safe — not just legally compliant, but genuinely safe for your specific child.

Staff who are trained in the specific behavioral, communication, and sensory needs of your child — not generic special education training.

Therapy services at the frequency and duration your child's needs require — not what fits the school's schedule.

A crisis plan that is individualized, reviewed regularly, and actually implemented by trained staff. Transparency about incidents — any restraint, seclusion, or injury involving your child must be documented and reported to you immediately.

Document everything. Date every conversation. Follow up every verbal communication with an email confirming what was said. The paper trail you build is the foundation of every right you will ever need to enforce.

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026          

ARTICLE FOUR

A Model That Could Change Everything

A proposal for day treatment centers as schools — and why the next generation of profoundly autistic children cannot afford to wait.

The world was not built for disabled children.

That is a fact — not an accusation. It is simply the reality of systems that were designed without this population in mind. But acknowledging that reality does not mean accepting it. It means looking at what exists, identifying where it fails, and building something better.

This article is about building something better. Specifically, it is about a model of care and education that could transform outcomes for profoundly autistic children — and why the time to build it is now, before an entire generation ages out of a system that never served them.

The Problem With 30 Minutes

Speech therapy. Occupational therapy. Physical therapy. ABA. These interventions have demonstrated real value for children with profound autism. The research is clear that intensity matters — that meaningful progress requires consistent, frequent, sustained engagement.

And yet the standard delivery model for most of these therapies is 30 minutes, one to three times per week, in a clinic or school setting where the child must be transported, acclimated, and then returned — often dysregulated — to whatever environment came before.

Thirty minutes is not a treatment. It is a gesture. And for a child with profound autism who requires intensive support across every domain of daily functioning, a gesture is not enough.

The Vision: Day Treatment Centers as Schools

What if the school and the therapy center were the same place?

Day treatment centers designed specifically for children with profound autism would combine the educational mandate of school with the therapeutic intensity these children require — in a single, purpose-built, safe environment where every element of the physical space, the staffing model, and the daily schedule was designed around the actual needs of this population.

These centers would provide:

  Speech therapy, occupational therapy, physical therapy, play therapy, and behavioral support delivered at clinically appropriate intensity — not squeezed into 30-minute windows but woven throughout a full therapeutic day.

  Physical education and movement programming adapted to each child's physical abilities and sensory needs.

  Sensory-safe physical environments — designed from the ground up with lighting, acoustics, space, and transition areas that support rather than overwhelm children with significant sensory processing differences.

Staffing ratios that actually reflect the support needs of profoundly autistic children — not ratios determined by budget constraints.

Integrated mental health support addressing the anxiety, mood dysregulation, and trauma that frequently co-occur with profound autism.

Family support and training components so that what happens in the center is reinforced at home — closing the gap between therapy and daily life.

The University Residency Model: Filling the Gap and Building the Field

One of the most persistent barriers to quality care for profoundly autistic individuals is the shortage of trained professionals willing and able to work with this population. The work is intensive, emotionally demanding, and frequently undervalued by a field that has historically oriented itself toward higher-functioning presentations.

Here is a solution:

"If you want to work with the autism population — any part of it — you do rounds. Just like medical residents. You work with the full spectrum before you specialize."

Universities training speech-language pathologists, occupational therapists, behavioral analysts, special educators, psychologists, and social workers should be required to include clinical rotations in profound autism day treatment settings as a condition of accreditation and graduation.

This model accomplishes several things simultaneously:

It fills the staffing gap in these centers with supervised student clinicians earning required clinical hours — reducing labor costs and expanding capacity.

It ensures that every professional entering the autism field has direct, supervised experience with the full range of the spectrum — including its most intensive presentations.

It builds a pipeline of professionals who are no longer unfamiliar with or fearful of profound autism, because they have worked with this population as part of their foundational training.

It creates an ongoing research partnership between universities and day treatment centers — generating the data this population desperately needs.

The support worker shortage that is leaving families without care, schools without staff, and children without services is not inevitable. It is the predictable result of a training pipeline that has not been designed to produce workers ready for the most intensive end of the spectrum. The university residency model is a structural solution to a structural problem.

A Generation Is Coming

Autism diagnosis rates have risen steadily for decades. The children who are profoundly autistic today will be profoundly autistic adults in ten years. In twenty years. For the rest of their lives.

The systems we are building — or failing to build — right now will determine what those lives look like. 

Whether those adults have access to safe, supportive, enriching environments. Whether their families have any hope of financial stability or quality of life. Whether the support worker who will care for them in adulthood exists — and is trained.

We are not building for an abstract future population. We are building for children who are alive right now, sitting in classrooms that were not designed for them, receiving therapy in 30-minute windows that are not sufficient for them, waiting for a system that has not yet decided they are worth building for.

"The world was not built for disabled children. But it doesn't mean we can't create loving, safe environments where they have a fighting chance. If the goal is inclusion — give these families something real to include them in."

This is the call. To universities: build the residency requirement. To policymakers: fund the model. To healthcare systems: partner with the centers. To communities: open your doors.

Our children cannot wait for a better system to arrive. We have to build it.

Our Autism Is Still Here.

— And so are we. —

Jennifer R. McKinnish

Nevada State Chair, NCSAutism Grassroots Network

Independent Advocate  ·  Parent Caregiver  ·  Based in Nevada, Speaking Nationally

This newsletter is an independent publication and does not represent NCSAutism or any affiliated organization.

If you are an employer interested in hiring from this community — PM me.

If you are a caregiver who sees yourself in these pages — PM me.

If you want to share your story or connect — PM me.

#OurAutismStillHere

ourautismstillhere@gmail.com

Our Autism Still Here  —  Vol. 1, No. 1  —  February 17, 2026