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. 

Skylar stretcher infographic

Demonstrating how safety belts work
Monitor and thermometer

What you may see in an ambulance lights and equipment


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.

Child Health Association of Sewickley Logo

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 DifferencesResearch 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.

children and adults who need care around the clock lack programs and staff support bill to increase direct care provider wages

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.


Pittsburgh Playhouse’s ARTfully UPlifting Takes Sensory Friendly Performances in a New Direction

Hope. Acceptance. Inclusion.

Each word beautiful, and each word a fundamental building block in the innovative production, ARTfully UPlifting at the Pittsburgh Playhouse at Point Park University. The producer, Kiesha Lalama, offers years of experience, as she worked to implement the first sensory friendly performance of A Musical Christmas Carol.

Kiesha Lalama sitting on a chair with elbows resting on her knees

ARTfully UPlifting

ARTfully UPlifting is unique because it brings together a variety of art forms into one production, and each act is relatively short, ranging from 90 seconds to 2 minutes in length. All in all, the show will feature “something for everyone, and most importantly, anyone.” This production is the first of its kind, and there’s something appealing about attending a show that gives us all a little space to experiment, explore, and practice.

Artfully Uplifting ad flyer

Families and friends are welcome and encouraged to bring snacks, and comfort items (fidgets, weighted blanket, toys, or transitional objects), and there will be a relaxation room next to the lobby if anyone needs to take a break. The atmosphere is relaxed, with come and go seating.

For information about accessibility please visit the Pittsburgh Playhouse Accessibility page.

ARTfully UPlifting will take place Saturday, March 30th at 2:00pm at the PNC Theater. Visit the Pittsburgh Playhouse website for details and ticket information. 


Autism Connection of Pennsylvania thanks Kiesha and the Pittsburgh Playhouse for all the work and dedication committed to ARTfully UPlifting built upon hope, acceptance, and inclusion.



Showing Love through Multiple Connections

Love Is in the Air is more than just a one (American) hit wonder by John Paul Young. It’s also a sentiment spurred by the made-up holiday of Valentine’s Day. I’d like to take advantage of this sometimes over-commercialized day to seize the opportunity to show love for people in the autism community. And as you are reading this, that means you are part of the crowd we love!
  • Are you a past or present board member, founder, paid professional, community partner, or a generous volunteer who has supported the autism community via Autism Connection? 
  • Could you be one of the seasoned folks who knew us as the original “ABOARD” – or Advisory Board on Autism and Related Disorders – who got this “party” started? 
  • Are you one of our supportive friends at ACHIEVA, a foundation giver, an individual donor, someone from the corporate world who has decided to sponsor us, or a phenomenal community group who has fundraised for us? 
  • Could you be a researcher friend, a compassionate judge, or a public servant we call on at all hours with questions or emergency situations needing attention? 
  • Are you a family member or autistic friend who chooses us for support, or who works as our colleague?  Or a marathon runner, or a personal friend or family member who supports our work?
Most likely you fall into many categories.  Any “yes” answers means we love YOU!

Love Takes Many Forms

Is using an emotional word like love appropriate in a professional setting?  I believe it is in the sense of agape, defined on dictionary.com here:

“agape

Original Greek: ἀγάπη (agápē)

Agape is often defined as unconditional, sacrificial love. Agape is the kind of love that is felt by a person willing to do anything for another, including sacrificing themselves, without expecting anything in return. Philosophically, agape has also been defined as the selfless love that a person feels for strangers and humanity as a whole.”


What Brings Our Thoughts to Love

Here’s why I’m thinking so hard about this now. Today we received our third request to cite a blog post – this one from Community Circles Restorative Justice Society (CCRJS) based in Ladysmith, British Columbia. Another was a request from Assets High School in Honolulu, Hawaii, and Cerebral Palsy Guidance in Syracuse, New York reached out to collaborate on bringing awareness of dual diagnosis of autism and cerebral palsy for a campaign in March (stay tuned).

This made me consider how we got here. And the logic chain goes like this: Tammi wrote the blog post cited today, found on our website that is funded by givers, the optimization of which was prioritized by our Strategic Plan originally written 12 years ago by board members (some of whom are family members or autistic people), shared by our community partners and friends online, maximizing our visibility so people in British Columbia could find, read, and use our words to benefit others we will never meet. Phew!  It was not hard to make that list because I often reflect on our roots and the huge crowd that has the autism community’s “back”, and it is all true.

Love is in The Air

I’m going to close this because I really need to hit “stop” on John Paul Young who’s been playing on repeat as I write this, permanently etching these lyrics into my brain for the foreseeable future.  

In the spirit of “sharing is caring”, here’s your earworm for today, with apologies to literal and visual thinkers for using that term. It’s okay if this is stuck in your head too  –  Here are those words for you to ponder.

Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)
And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (your eyes…)
Love Is In The AirIn the whisper of the trees (whisper of the trees…)Love Is In The AirIn the thunder of the sea (thunder of the sea…)
And I don’t know if I’m just dreamingDon’t know if I feel saneBut it’s something that I must believe inAnd it’s there when you call out my name (call out my name…)
Love Is In The AirLove Is In The AirOh oh oh
Love Is In The AirIn the rising of the sun (of the sun…)Love Is In The AirWhen the day is nearly done (is nearly done…)
And I don’t know if you’re an illusionDon’t know if I see it trueBut you’re something that I must believe inAnd you’re there when I reach out for you (reach out for you…)
Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)
And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (in your eyes…)
Love Is In The AirLove Is In The AirOh oh oh, oh oh oh, oh oh oh

 

Love Is In The AirLove Is In The AirLove Is In The AirLove Is In The AirOh Love Is In The AirOh Love Is In The Air