About Autism – Autism Connection of Pennsylvania

two heads with word bubbles. One word bubble says meaning and the other says words

Autistic Language Processing: What Words Mean Versus What People Mean

Autism Connection of PA hosts the Late Diagnosis of Autism virtual support group the second Wednesday of every month, and topics cover everything from masking to finding out how to get an adult autism evaluation. On December 11th 2024, the group explored Autism and Communication.

The Late Diagnosis of Autism Support Group Meeting was held online with an option to leave cameras off, and/or use the chat feature instead of speaking. The topics people brought up during this meeting included:

Communication difficulties
Difficulties with small talk
Offending people inadvertently
Positive aspects of communication differences
Ask questions to cope when they feel overwhelmed
To end conversation “thank” them
Sent boundaries by setting time limit
Texting communication differences lack of body language
Using AI to help with tone in emails
To help with conversation exhaustion, run to the bathroom and have concealed fidget items

Social communication has been a concern for, well, my entire experience interacting with people, before and after I knew I was autistic. Interactions with peers in elementary school were baffling, and I often was at a loss when it came to words and meaning. This differs from understanding written communication, and it primarily settles on literal meaning versus social meaning: the difference between what words literally mean and what people mean when they use words, along with the complexity of reading body language, facial expressions, and tone of voice, not to mention the unspoken rules of social discourse that I can’t help but break because they are situational and ever-changing. There are a lot of things going on and I tend to focus on one thing at a time, like many autistic people do.

Balancing between the complex rules of grammar and the even more complex rules of social interaction is very taxing on the brain. During social exchanges, we “read” expressions, gestures, tone, and try to put everything in context. The challenge is that I tend to focus on one thing at a time, and I miss out on important details.

For example, if someone says, “I didn’t expect to see you here,” I know what the words mean, but I don’t know what the meaning of the sentence is. This is because it can mean a number of different things, and if I don’t catch the facial expression or tone, I circle back through all of the possible interpretations, and then I miss whatever follows in the exchange. This can make me a poor conversationalist because my mind tendrils out into thoughts that can’t be controlled, and are set into motion by words.

When I’m trying to make sense of what a person means, my gut instinct is to rephrase their spoken words aloud to help things make the most sense, which can come off as constantly correcting people, and is usually off-putting. So while I am always striving for best understanding, and I think I am improving the interaction, I may actually be misunderstood in the process.

Person: “He convinced me to vote.”

Me making sense of the statement: “He persuaded you to vote,” seems like correcting, but it’s interpreting.

Decoding: It’s Just Like Riding a Bicycle

Some of us have to work hard to decode what people actually mean, which takes a lot of time and energy. It’s like how riding a bike comes naturally to many, but for others, it is a lot of work to think about coordinating: push left foot down, then right foot, keep eyes on the horizon, don’t look down, grip the handle bars but not too hard, don’t let the wheel shake or wobble, keep balance but lean to one side while twisting the handle bars and pedaling at the same time to make a turn. Whew! This is how hard interpreting language can be for autistic people who often do things best, one thing at a time.

Yes. It is just like riding a bicycle.

When I was a child, I had a stutter, and my speech therapist suggested, “Don’t think about what you are trying to say, think about the words you are using.” I have a clear understanding that there is a language of thought and a language of words, and they don’t always gel. If you’ve ever said, “How should I put it?” you may be able to relate. It – the idea that is in the language of thought – has not been formed into words yet. It just hangs there, and you may not find the words to communicate it at all. For me, words, dictionaries, thesauruses, and etymology have become areas of intense focus, and it’s magnificently complicated.

The following may appear to be nit-picking about correctness and grammar. I don’t mean to be prescriptive as a general rule, or imply everyone should use standard written English in conversation. To me, it is more important to consider how words create social meaning, than to dictate how they should be used based on grammatical rules that date back to the 1500s, and honestly seem arbitrary (for example, Sir Thomas Smith’s De Recta et Emendata Linguae Anglicae Scriptione [1568] that bases English grammar on Latin, and yes, it’s written in Latin).

(Dictionaries are either traditionally prescriptive and or descriptive, and they’re at odds. The first descriptive dictionary that I’m aware of is Webster’s Third New International Dictionary of the English Language, Unabridged (1961). My favorite is Bryan Garner’s A Dictionary of Modern American Usage (1998). This type of information is probably why people may navigate away from me at parties – I’m a bit of a word nerd, so I’ll stop here with the dictionary usage wars.)

Literal Meaning and Social Meaning Confusion

A social exchange that can interfere with interpreting meaning may go as follows:

Person: “I’m nauseous.”

Me: “You’re not nauseous. I assure you. I feel fine and everyone else seems perfectly okay.”

Why might I, as a literally-minded person, say that? She’s saying she feels sick, and I’m misinterpreting that as her saying she worries she is making others feel sick. I figure that I am doing the person a kindness in assuring her that she is indeed not nauseous since no one appears to be sick in her presence since nauseous literally means “causing nausea or disgust.” Over time, the meaning has changed to “feeling nauseated” in a social context, and in descriptivist dictionary entries.

When it comes to social language – how spoken words are actually used – in this type of exchange, I will most likely be wrong. She may wonder why I would suggest that I know exactly how she feels, and why on earth would I mention that others don’t feel sick?

“Language Nerd Masking © Autism Connection of PA, 2024 is camouflaging knowledge of correct language by trying to blend in by allowing the rules to be bent.” With enough practice, you can even break the rules yourself!

There’s an exhaustive list of words that take up my brain energy and require a lot of effort for me to decode in conversations, because they no longer hold their literal meaning. Two examples:

Impact – is a noun currently used as a verb – maybe because affect doesn’t have as much punch. You wouldn’t say “I was impacted by the car” because it simply doesn’t make sense. Wisdom teeth are impacted. But you would say, “This event impacted my life.” In my mind, I have to rephrase the sentence as “This event made an impact on my life” for it to make sense to me. Also, I have no idea whether the impact was positive or negative. This all takes time for me to process, and if the conversation is moving forward, I miss a beat, or I may get completely lost.

Myriad – is like numerous but it’s now being used as a noun “a myriad of reasons” that strikes me as odd as someone saying “a numerous of reasons” but it’s how people use the word, and usage prevails.

These and myriad other examples impact my social interactions because I have to take extra time to figure out what people mean – and that extra time takes my attention away from other words exchanged while I am sorting this all out. The conversation moves forward, and I’m a step behind and can’t catch up.

Words Drive Meaning, Meaning Drives Relationships

Consider the back-and-forth dynamic in conversations, and think about a time when you have asked a “yes or no” question. Did the person simply say “Yes” or “No” leaving something awkward hanging in the air? They may be aware of the awkwardness, but may not be aware of the social rule requiring further information.

When you’re in the presence of an autistic person, remember that the onus is always on them to sort through meaning. Exchanges that come naturally to non-autistic people take a considerable amount of energy for an autistic person to process, interpret, and respond. And it’s exhausting.

The writer David Foster Wallace explores struggling with peer social interactions as a child in Consider the Lobster and Other Essays. He excelled in standard written English, but he was “actually deficient in Language Arts…[had] only one dialect…[could not] alter his vocabulary, usage, or grammar, [could not] use slang or vulgarity; and it’s these abilities that are really required for ‘peer rapport,’ which is just a fancy academic term for being accepted by the second-most-important Group in the little kid’s life.”

Many of us continue to struggle to feel accepted by the “Group,” as adults. Taking all of this into account, revisit the bulleted list from the Late Diagnosis of Autism Support Group meeting. What would you add to the list for yourself?

Richard Tambwe Shares His Vision of Hope and Autism

Welcome to Pennsylvania. What brings you to Pittsburgh?

I have been living in Pittsburgh since 2021 (in the midst of Covid-19 pandemic). I am a PhD student at Duquesne University and I am already finishing my program in the Theology Department. Not only does my Christian faith in God encourage me to serve others, but also my area of studies sharpens my social awareness and inspires me to practice my faith by “creating beauty” for social justice. Indeed, there is an intrinsic link between beauty, love, justice, and peace that can be explored ad infinitum.

Why is autism an important topic for you?

Autism is an important topic for me because I am the father to a soon seven-year-old boy who was diagnosed with ASD a few years ago. I am still gradually learning about it and slowly seeing things differently in the line of Rick Guidotti’s “change how you see, and see how you change” (Positive Exposure). For example, when I started seeing my child’s ASD (oftentimes emphasized through the aspect of “disorder”) as a “disability for him,” that is, a limiting condition for him, not a “burden for me or for his mother or the wider society,” I started focusing on him and only him, than on anyone or anything else. This helped me avoid many noises and allowed me to see many other things, including the beauty of the mosaic of life and humanity, in which each one of us has their role to play. As a believer, I am convinced there is a reason why God sent my son with the ASD condition and it is my duty to help him lead a full and happy life, and fulfill all his potential.

You have a vision about hope, learning and resources. Can you share that vision with us?

Here is what I have in mind:

Perception of Disability

The perception of disability, be it physical or mental, is perhaps not the same between the Democratic Republic of the Congo (DRC), the country where I come from, and here in the USA: is there a way to help Congolese refugees arriving here not to feel embarrassed if they have a disability or know of a family member who needs help in this sense? The aim would then be to reassure them and show them that each individual is a gift that adds to the mosaic of the whole human community (every difference deserves to be celebrated, not stifled or annihilated or stigmatized).

Taking Perspective from the Disability Community

As is the case all over the world and perhaps even more so in DRC, where culture sometimes leads people to believe that the origin of any disability is witchcraft or curse, isn’t it important to educate people to approach disability from the point of view of disabled people themselves and for them, rather than from the point of view of society and its general standards? The aim here is to see the people concerned as having a “disability,” not being one themselves, i.e. they suffer from a limiting condition (physical or mental); they are not the ones inflicting suffering on society. They are the ones to be put at the center, considering everything from their point of view (movements, senses, activities, and so forth) and not from society’s great number.

Changing the Narrative

The disabled person is perceived as “different,” not as abnormal or as a stumbling block, a gene, and an embarrassment from the point of view of the majority. They have “difficulties in forming and maintaining social relationships, by impairment of the ability to communicate verbally or nonverbally, and by repetitive behavior patterns and restricted interests and activities” (Merriam-Webster), and not the other way around, where the majority would see them as incapable, lazy, incomplete, lesser, abnormal, etc., as if they were responsible for the limitation they suffer from… They are the ones experiencing “social isolation;” perhaps they are the ones who are disturbed by our inquisitive gaze and not the other way around description as “lack of eye contact.” Educating people with such an awareness is irreplaceable.

Learning from People with Lived Experience

In the case of autism, for example, many parents and relatives are often at a loss, and many of their questions (often unformulated) remain unanswered. Shouldn’t we be a step ahead of them, considering the experience of others who have gone through the same thing, while recognizing that every case is unique, and pointing out resources for certain answers that are already known?

Hope and Encouragement

Wouldn’t there be more impact and positive results if all this were done in a relaxed way, emphasizing aspects of hope rather than despair or fear, joy rather than sadness, possibilities rather than limitations, and so forth? The aim is to reassure the family members of the person living with autism that their child is a person with enormous potential, just like any other child, provided they get an education appropriate to their condition.

Much of what you talk about requires people to change the way they perceive autistic people. Part of that requires empathy and new patterns of thought. What are some ways we can achieve this?

A practical way of doing this could be sharing videos, TikTok posts, art products or production (photos, paintings, music, etc.), Internet links, resources, and so forth, all in an informal, relaxed and pleasant way, while also providing useful information. For example, if I had to recommend the American comedy-drama series “Monk”[1] On Netflix, assuming that the “obsessive-compulsive disorder” of the main character qualifies as ASD, I would have pointed out that Adrian Monk (Tony Shalhoub) is a good example of a successful integration of an individual with disability in the smooth running of a city. But this does not prevent us from grasping the different challenges facing Monk and his entourage throughout the episodes.

Here are just a few examples:

Monk’s apparent lack of empathy
his phobia of germs
his obsession with the idealized image of his late wife Trudy Elliot Monk

Is Monk’s “absence of empathy” or “germ phobia” a problem for him or for the larger society? Isn’t it true that, once Monk is known as such, something else is expected of him (namely, solving homicide’s mysteries with the help of his assistants and colleagues) and not his sympathy or sociability?

Everybody loves Monk’s efficiency, while abhorring his sociability. Nevertheless, whether it is Sharona Fleming (Britty Schram) or Natalie Teeger (Traylor Howard), Adrian Monk’s assistants and fellow cops, they all manage to discover his qualities, understand him and, frankly, love him, all the while keeping him involved in the running of the San Francisco Police Department’s task force dealing with homicides. Besides, Monk’s unconditional love for Trudy (even after she dies) is a model of a lifetime engagement of love.

Inspired by this tragicomic series and the way it is perceived by the audience watching it, and placing Monk at the center, I wonder if it can serve as an example for thinking about policy and advocacy for people living with the disability of autism in the US. It is not a question of charity, which should be left to the religious sphere, but of justice and common sense of give-and-take that govern interactions in a civilized society.

[1] Andy Breckman (Creator), Monk [Comedy Drama Series] (2002-2009), Mandeville Films, Touchstone Television, and Universal Cable Productions.

Autism Connection of Pennsylvania thanks Richard for sharing his vision. A simplified version of the interview is below.

Gia sitting on a chair instructing a class

IGIA Movement for Health Visits Autism Connection of PA

IGIA Movement for Health is well known in Pittsburgh, Pennsylvania for its innovative approach that incorporates various somatic practices like yoga, meditation, Hanna Somatics®, and dance to tap into the power of internal movement, stimulate new neural pathways, and improve the mind’s regulation of posture and emotions.

For the autism community, sensory overload and difficulty with interoception can interfere with the ability to recognize and manage emotions, so Autism Connection of PA was ecstatic to be invited to host IGIA Movement for Health for three pilot movement workshops. Three Rivers Community Care is also hosting a class on August 12th.

Care practitioner and IGIA Co-founder, Gia Cacalano, leads the Master Classes, taking cues from attendees to form her approach. IGIA movement practices can be done both seated and standing, they’re accessible, and no two classes are exactly alike. Co-founder and CEO, Harris Farris quietly participated in the first pilot class along with a small group. One autistic participant shares her experience with the class, and encourages others to attend.

Experiencing IGIA for Movement Master Class

I honestly didn’t know exactly what to expect, which can be a great source of anxiety. It was hot outside, and even though it was only 10:15 in the morning, I was already feeling overwhelmed with sensory overload. At least I think that’s what it was. Sometimes it can be difficult to identify what is going on with me, both physically and emotionally. I also realized that I had lost track of time and was running late.

The room was open and large with soft lighting. The instructor, Gia, was welcoming, the number of people in the class was small, and I had a great sense that I could just be myself. Gia explained that there is no wrong way to do the movements, and described how each movement affects the body.

Relaxes the nervous system
Spatial awareness in the environment
Internal spatial awareness – how I moved and how those movements related to how I was feeling
Observational rather than judgmental – no worries about being right or wrong, just noticing
Feeling less self-conscious – less resistance to trying something new
Sense of calm

Video: Harris Ferris demonstrates some simple movements

I recognized some of the movements and I thought, “Hey! These stem from stims!” Self stimulatory behaviors (or self-regulating behaviors) often serve a purpose, and I was perfectly happy to do some hand flapping that transformed into more delicate movements. It turns out that flapping and jumping ignites the lymphatic system, and can improve the immune system.

Visual stims were also weaved into the movements. We worked on eye tracking along with slow, intentional head movements that seemed to broaden my peripheral sight. I was able to take in the entire room visually rather than focusing on specific elements.

“Rocking is a controlled fall,” the instructor said. This statement stuck with me because I usually fight the urge to rock back and forth to calm myself. The slow, intentional rocking movements were among my favorites, and it was especially helpful to know that we were working on balance along with body awareness.

Time passed quickly in the movement class, and even though there was no rigid structure, the instructor came full circle and this helped me recognize that the session was coming to a close soon. We began and ended with foot movements, gradually rocking to a standing position.

I felt grounded and calm after the session, and I continued to notice when my muscles (especially in the shoulders) were getting tight throughout the rest of the day. I can see how practices from the movement class could help me regulate emotions after sensory overload, or when I struggle with interoception (during times when I feel disconnected from what I’m feeling, whether an emotion or hunger, fatigue or thirst).

This was the first of three sessions, and they are off to a great start.

Gia notes that “even simply being present in the room–just observing and breathing–changes the dynamic. Even if someone showed up and just focused on breathing, that would be a complete session.”

If you want to learn more about IGIA for Movement Master Class, please visit IGIA Movement for Health.

To participate in upcoming classes August 10th and 12th register here.

Goodwill Hose Company Ambulance parked on a sunny day

Disability is Not a Crime Training in Lock Haven Pennsylvania

We were thrilled to visit and teach new friends from the first responder community in and around Lock Haven, PA this past week. We listened to our audience’s experiences and training goals, learned how tremendously professional and caring they are in their work, then launched into delivering “Disability is Not a Crime” content.

Everyone in the room had autism or an autistic relative, and one learner manages two autistic employees, so engagement was high. The conversation was so fantastic we stayed well past the end time of 9:00pm, thinking of creative ways to support autistic people in emergency situations.

Blending an autistic presenter (who is an EMT) and a non-autistic trainer seems to help people feel comfortable asking questions no matter their personal experience. We left feeling a little sad that we don’t live closer to experience their beautiful area and work together more to support folks with disabilities in the region.

Huge thanks to Goodwill Hose Company Ambulance Association for hosting us! And thank you to the attendees for sharing stories of finding missing persons who wander (some multiple times), supporting autistic people in car accident responses, and for telling us a few rattlesnake stories we don’t often get to hear!

Since we were at an EMS base for the training, we had the opportunity to take some photos of equipment. We will be using the images to help people understand what to expect in emergency situations in an ambulance. People may be safer if they know a little more about what to expect when they are sick or injured. Believe it or not, it is not uncommon for people to be arrested and charged for fear-based behaviors they may have during emergency situations, when they are injured or sick on the scene, or in an emergency room.

This project is funded by the Pennsylvania Developmental Disabilities Council.

Child Health Association of Sewickley Grant: Spelling

We are glad to share that Autism Connection of Pennsylvania has been granted the opportunity to further our mission of being a lifeline and hub for families and adults in the autism community. With heartfelt gratitude, we announce that we have been awarded a grant of $10,000 by the Child Health Association of Sewickley.

We believe in leaving no member of our community behind. Our organization is disability-led, with a passionate team that includes three autistic board members, and 33% of our staff is autistic. We serve people and families from infancy through older adulthood, with a goal that
everyone receives the support, information, and advocacy they deserve.

This grant is a testament to our commitment to inclusivity and accessibility. With these funds, we will embark on a project aimed at supporting people who are nonspeaking or minimally verbal, hoping to help them communicate their needs and wants—often for the first time.

Here’s a glimpse of what this project entails.

Project Goals

Link families who have had success with spelling to access academic, social, and healthcare needs
Engage families in dialogue with newcomers for whom traditional speech and language services are not sufficient
Emphasize the concept of presuming understanding on the part of nonspeaking autistic young people and promote literacy from a young age
Educate caregivers about autism brain differences that affect spoken communication
Encourage families to explore new communication methods with support from experienced practitioners

Measurement of Success:

Number of new families introduced to spelling for accessing various needs
Number of families using spelling with some success
Engagement of professionals in training sessions
Distribution of spelling boards at no cost
Involvement of families, teachers, and therapists in implementing spelling

This project aligns with our core values of inclusivity, accessibility, and support. We are dedicated to making a tangible difference in the lives of nonspeaking autistic people and their families, ensuring that communication barriers do not hinder their access to healthcare, education, and social engagement. Together, we can break down barriers and create a more inclusive world for people with autism who need access to communication.

Thank you for being a part of our journey.

Understanding The Connection Between Autism Spectrum Disorder and Cerebral Palsy

April is a time when we come together to recognize the diverse experiences of people living with autism spectrum disorder (ASD) and their families, and we encourage the momentum to continue throughout the year. Autism is a complex neurodevelopmental condition that affects how a person communicates, interacts with others, and experiences the world around them. As we delve into the intricacies of autism, it’s essential to understand its relationship with other conditions, such as cerebral palsy.

The Intersection of Autism and Cerebral Palsy

Cerebral palsy (CP) is a group of neurological disorders that affect movement, posture, and muscle coordination. While CP primarily impacts motor function, it can also co-occur with other developmental conditions, including autism. Research suggests that approximately 6% to 15% of individuals with CP also have a diagnosis of autism, highlighting the overlapping nature of these conditions.

The co-occurrence of autism and cerebral palsy presents unique challenges for each person and their families. Understanding the relationship between these conditions is crucial for providing comprehensive care and support. While the exact mechanisms underlying their co-occurrence are not fully understood, a couple factors may contribute to their association:

Common Risk Factors – Both autism and cerebral palsy have shared risk factors, including genetic predisposition, prenatal complications, and environmental influences.

Neurological Differences – Research suggests that disruptions in brain development may contribute to the development of both conditions. Structural and functional abnormalities in the brain can manifest as diverse symptoms associated with autism and cerebral palsy.

Navigating Dual Diagnoses

Receiving dual diagnoses of autism and cerebral palsy can be overwhelming for individuals and their families. It’s essential to access comprehensive support services and resources to address the unique needs associated with each condition. Here are some steps to navigate this journey:

Seek Multidisciplinary Care — Collaborate with a team of healthcare professionals, including pediatricians, neurologists, developmental specialists, and therapists, to develop a personalized treatment plan tailored to your child’s needs.
Access Early Intervention Services — Early intervention is critical for optimizing outcomes for children with autism and cerebral palsy. Explore early intervention programs that offer therapeutic interventions, educational support, and family-centered services.
Connect with Support Networks — Joining support groups and connecting with other families facing similar challenges can provide invaluable emotional support, practical advice, and shared experiences. Organizations like Autism Connection of PA offer resources and community networks.

Autism Connection of Pennsylvania thanks Jennifer LaRocco, Editor & Coordinator at Cerebral Palsy Guidance, for sharing her expertise through this insightful guest blog post. Jennifer’s contribution sheds light on the intricate relationship between autism spectrum disorder and cerebral palsy. As we commemorate April’s focus on autism, let’s keep the momentum going throughout the year. Thank you, Jennifer, for your dedication to raising awareness and fostering understanding in our community.

Please visit Jennifer’s page on the Cerebral Palsy Guidance website to learn more.

Autism Community: Fewer Words, More Action

Psychologist and author, Dr. Ross Greene, states, “Children do well when they can.” This notion recognizes that when children have their needs met, their behaviors eventually fall into place. This applies to all of us. We do well when we can.

We expect, somehow, for families in crisis to embrace their situations with unconditional positive regard. People are not getting what they need. They are in crisis. We must work together so we can all move forward. A parent took time to answer questions for Autism Connection — which was not an easy task considering the the events of any day can be unpredictable, unmanageable and of colossal magnitude — things that often go without consideration.

What is the single most important service lacking for your child at this stage?

Since my son just turned 18, I would have to say any and all adult services are lacking. There is not an appropriate day program for him currently available once he graduates. Social security is one denial after another, even though it is the only means for him to have any of his own money. I am fortunate that I have a pretty solid knowledge base of what to expect, what is available and not available, so I can’t imagine what all of this is like to someone going in who is completely new to this.

It’s important to note that services are lacking for all ages. Most daycares are not equipped for children with behavioral and extra needs. Preschools have waiting lists. Find someone to look after my son for a date night? Forget it. Most social skill programs are full, or not a good fit for the most affected.

Do people underestimate safety concerns?

Unfortunately, yes. The obvious concern is water safety. Every time I see a news story about a child drowning, I wait to hear that the child had autism. I’ve also seen countless parents ask about any assistance to build a fence. Our kids like to wander, and sometimes have no ability to gauge personal safety. Fences are expensive and having any sort of funding to alleviate the cost would help so many. It is incomprehensible to me that charities deny funding for this most basic safety tool, despite parents with lived experience asking for it over and over.

Because autism is often an “invisible disability”, I still have to hold my son’s hand when we’re out in public and he is 5’8″. He has frequently taken food and drinks from strangers, and other than wearing noise-canceling headphones; nothing outwardly indicates that he has a disability. Fortunately, we have mostly been met with kindness when this happens, but a few times we haven’t. I worry about our safety, as a family, if we encounter someone who doesn’t understand.

What factors keep you from going into the community?

The world in general is not sensory friendly. I plan ahead, sometimes doing a dry run, for anything that is new. My husband and I will often drive separately, so if someone has to leave with our son, one can leave while the other stays. It’s actually gotten harder to go out the older he gets. His disabilities are harder to hide, and the only reason we would want to do that is because people are cruel and judgmental. We mostly stick with a handful of “safe” places, and rarely deviate from them.

Can you make a wish list of supports and services that would help your family?

Qualified caretakers and adult care, for sure. I can’t stress enough how disconnected I feel from my husband and friends because I don’t have an experienced person to watch my son. I just want one night every month or two to try to be out, stress free, with adults. I just don’t have that.
Day programs for the most profoundly impacted autistic people. One that really considers all needs, from social connections, meals, cool activities, and general safety and specialized medical support for seizures and other incidents, are critical. My son has had pica for most of his life, so things like houseplants, art, and cleaning supplies pose a risk to him regardless of his adult age. That’s one reason that competitive employment or random community settings are hazardous to him without lots of support around.
Funding for business startups: Totally wish list idea, but grants and/or special loans for parents or caregivers who have business ideas for their loved ones with disabilities. I have dreams of opening up a business where my son and others like him could do meaningful work, but start up costs are prohibitive.
Flexible employment for parents and caretakers: I also wish more employers would understand that parents do want to work. We talk about how those with disabilities are under or unemployed. That goes for their parents too. I would love nothing more than to work a full time job and contribute financially to my household, but because of my son’s ever increasing needs, I can either only work part time, or wish for the unicorn well-paying, work from home job, that would understand if I need to take a break if my son is in the hospital.

What’s the hospitalization about?

Our son has epilepsy which frequently co-occurs with autism. This is complicated as he cannot tell us if he feels a seizure coming on (an aura) and cannot tell us how medications are affecting him at all. Also since he is nonspeaking, we need to have eyes on him at all times since we cannot just yell “Hey, Jackson (not his real name) are you okay?” to check on him, and have him answer. He has been hospitalized several times following 911 calls and ambulance rides, which he also cannot communicate during to participate in assessments. Just last month, he was on a ventilator due to a seizure. Many families like ours live with this kind of daily stress, and unexpected terror during episodes. There is not enough research or help to support any of our kids or our families.

Is there access to doctors, dentists, and other health professionals who specialize in autism?

There are not a lot of medical professionals experienced with or specializing in care for autistic adults. There are some that you find by word of mouth, if you’re lucky. At this point, I’d say I’ve had the best luck just strong-arming my way into offices we already go to. My tip is to go through the front desk staff. They always know. By asking a lot of questions and being super friendly, I’ve gotten appointments with an oral surgeon for my son’s wisdom teeth, and at my dentist for regular cleanings. I’ve been able to extend his time at his pediatrician’s office as an accommodation. But I also started to talk with my own doctor to see if they would be willing to take on my son as a patient as a backup for when he ages out. There are no “autism ready” doctors that I know of, so I’m making my own network.

How do you feel about disability services neglecting your son’s needs, such as refusing to create meaningful day programs outside of competitive employment?

It makes me really angry. The super cynical side of me wonders if my son doesn’t matter to society as a whole because he isn’t “contributing”, in the classic sense, that the people in charge find most important – maybe because that is what makes them feel most important – their jobs. Giving people like my son – and there are thousands in PA we do not see because they are isolated at home – what he needs is expensive and takes creativity and caring, and no one is willing to have programs like that.
We have senior centers and adult day programs for elderly people who also have care needs – so this feels very discriminatory. People call day programs “segregated” but nobody will be more segregated than my son when he is stuck at home once school ends.

How does your son feel when he’s out of school for prolonged periods? What, if any, behavioral changes happen during those times?

He definitely gets frustrated, bored, and will sometimes act out. I’m only one person, and I can’t give him the kind of attention, structure, and activities that school can. We have another child who also needs to be cared for and entertained, and my husband works extra time, since I can’t contribute financially to the best of my abilities. So I’m trying to be a one-woman show. I think we all get burned out from that.

How do you practice self-care?

The short answer is I don’t. I can’t pick up and leave for a relaxing weekend or girls’ night out. There are places that offer respite for parents, but don’t provide childcare, so how are we supposed to take advantage of that? On school days, I do get a little bit of time to myself, so when I’m not cleaning, doing housework, or working (I work from home part time), I work out in our garage gym. My husband built it during the pandemic, and it is my one sanctuary.

How many other families would you guess you are in contact with who share your thoughts and feelings about this?

I’ve been on several day program tours with other families from school, and we’re all in the same boat. We all feel that none are appropriate for what our kids need. There are a lot of parents of kids transitioning to adulthood that just feel lost.

I am also a member of online parent groups and have been over the past 16 years. There is a tremendous amount of unmet needs there, just like we have at my house. Who is going to listen to people who can’t influence politics (no money or power), who can’t donate to a big charity and have strings pulled, and who have shrinking social networks due to staying home to keep people safe? We are a large but powerless population.

It’s exhausting when someone who doesn’t know you, your family, or your situation says that every decision you make is wrong. Whether it’s about what therapies you choose to use, school to attend, wording to describe your loved one’s diagnosis, we can’t seem to make the right decision. At the end of the day, my husband and I are trying to raise our son to be as healthy as possible, while keeping him safe. It’s increasingly difficult to do that when those who don’t know our situation, or want to acknowledge how severe of a disability autism can be, are making decisions for us.

I’d like to encourage caregivers, family friends, anyone who loves a family with profound autism, to contact their local government representatives. If you can, take your person with autism with you. They need to see what we are dealing with. They need to know that the solution is not one size fits all. We are struggling. We need more support. We need more funding. We need others to stand with us and help us.

The autism community — the entire autism community — is in crisis. This is not about levels, it’s about human beings who need help. We are beyond awareness and acceptance. We are beyond words. It’s time for action.

You can help by contacting your Pennsylvania legislator to support the Proposed PA Budget Increase for Intellectual Disability and Autism (ID/A) Services System. Compose your message here.

We recognize that much more needs to be done, that there are gaping holes in services and programs in all ages and stages in the autism community and that people are in great need. This is one step people can take in Pennsylvania.