My son Michael is profoundly autistic, nonverbal, has seizures, pica behavior and he’s bitten, kicked, pinched, and punched caregivers over the years. We’ve been doing this for over thirty years. And in all that time, finding good, reliable autism respite care has been the hardest part. Not the behaviors. Not the medical stuff. The people problem. This is what we’ve figured out.
Key Points
- Hire for temperament first experience second – patience and flexibility matter more than a perfect resume though some lived experience saves you a lot of time.
- Look in unexpected places – climbing gyms, university departments and school paraprofessionals have all been goldmines for our family.
- Build a bench, not a single savior – you need multiple people you can rotate through, not one perfect hire you’re terrified of losing.
- Rebrand the job posting – titles like “Direct Support Professional” attract a different, more serious caliber of applicant than “babysitter” ever will.
Why This One Hits Home
If you’re raising a profoundly autistic teen or adult, you already know the moment I’m talking about. The one where you realize Grandma and Aunt Susan just aren’t built for this anymore. Family carried us through the early years with Michael and I’m forever grateful for that. But somewhere between grade school and adulthood, the aggression, the seizures, the sheer physical intensity of caregiving outgrows what loving relatives can safely handle. This episode is for anyone standing at that exact crossroads, wondering where on earth you’re supposed to find people who can actually do this work and do it well.
Finding People Who Actually Get It
Here’s something I’ve learned after thirty plus years of this. The perfect resume doesn’t guarantee the perfect helper. Autism Speaks makes a good point. Sometimes the best caregivers are the ones who are teachable, patient and flexible without a bunch of preconceived notions about what your child needs. That said, our own experience says a little bit of real world exposure goes a long way. People who’ve already been in the room during the meltdown, who aren’t rattled by pinching or biting, save you a month of trial and error. You’re not just hiring a skill set, you’re hiring a nervous system that stays calm when your child can’t.
Seven Places to Look
We didn’t find our care team in one place. We found it in seven.
Respite locator services – ARCH’s National Respite Locator (archrespite.org) is a solid starting point, even though respite funding and Medicaid rules vary wildly by state. It’s a launching pad, not a finish line.
Climbing gyms – I know how this sounds but hear me out. Rock climbing culture runs on trust and patience when you’re belaying someone, you’re literally holding their life on a rope. We’ve found climbers at places like Crux Climbing Center here in Austin who bring that same steady, grounded energy to working with Michael and his friends. Some have even rearranged their own schedules around our John 13 community program.
Other special needs parents – This one requires a mindset shift. It’s tempting to hoard a great helper and never share their name with anyone. But caregivers actually like variety and connecting families creates a rotating support system instead of one fragile point of failure. Everybody benefits and burnout goes down.
School paraprofessionals and aides – Especially during summer break, these folks are already background-checked, crisis-trained and often already know your child. That built-in trust and training is worth a lot.
Faith-based disabilities ministries – General volunteers might not be ready for the intensity of level three autism behaviors but every once in a while you find someone with real lived experience a sibling, a cousin, a niece with similar challenges and that person often shows up with a depth of motivation you can’t manufacture.
Universities and community colleges – Skip the general job board. Go straight to department heads in special ed, nursing, psychology, OT and speech therapy. Frame it as paid hands-on clinical experience rather than babysitting and you’ll be surprised how many professors want to partner with you. This is genuinely one of the best ways to find someone who could become a long-term hire.
Rebranded job postings – Titles matter more than you’d think. Swap “babysitter” for Direct Support Professional, Behavior Support Aide or Community Support Companion and you’ll start attracting people who understand the weight of the job before they even walk in the door.
You’re Building a Bench, Not Chasing a Miracle
This is the part I really want to land. You are not looking for one perfect person to save your family. You’re building a roster, a couple of lead helpers who can back each other up, a weekend respite person or two and an emergency option in your back pocket. It takes time. It takes turning over a lot of stones. But after thirty years and literally hundreds of hires, I can tell you these people exist and many of them are genuinely looking for work that means something.
What You’ll Learn
- Why hiring for temperament can matter more than hiring for a perfect autism specific resume
- How respite locator services like ARCH can jumpstart your search, even with state-by-state limitations
- Why climbing gyms and similar communities produce surprisingly great caregivers
- How partnering with other special needs families creates backup support instead of competition
- Why school paraprofessionals are an underused summer break resource
- How to approach university departments the right way to find future long-term hires
- Why the job title you post under changes who applies
Notable Quotes
“Family love is unconditional, but family members aren’t equipped to handle the intense types of behavior in a safe clinical way.” – Mike Carr (00:04)
“A great helper doesn’t always need a perfect autism resume.” – Mike Carr (01:09)
“The culture of rock climbing is entirely built on patience, tenacity and mutual trust.” – Mike Carr (02:55)
“The abundance mindset says that you’ve got this great caregiver… there’s no way you want to share his or her name.” – Mike Carr (03:50)
“You are not looking for one single savior to rescue your family. You are building a bench.” – Mike Carr (07:19)
“These professional, compassionate, rock solid human beings do exist and they are really looking for meaningful work.” – Mike Carr (08:08)
“You do not have to walk this path alone.” – Mike Carr (09:01)
Resources & Links
- ARCH National Respite Locator Service (archrespite.org) – a state by state directory to help families find local respite care options.
- Autism Speaks – referenced for guidance on prioritizing temperament and teachability when hiring caregivers.
- Crux Climbing Center (Austin, TX) – a local climbing gym where Mike has recruited caregivers through relationship-building.
- John 13 Community Program – Mike’s own community initiative connecting climbers and volunteers with families like his.
- University departments (special ed, nursing, psychology, OT and speech therapy) – potential partners for paid, credit-bearing student caregiving placements.
Timestamped Outline
- 00:04 – Introduction: The challenge of finding reliable care as your child grow older
- 01:09 – Who to look for temperament vs. resume
- 02:05 – Path 1: ARCH’s National Respite Locator Service
- 02:55 – Path 2: Climbing gyms and climbing culture
- 03:50 – Path 3: Networking with other special needs parents
- 04:37 – Path 4: School paraprofessionals and aides
- 05:37 – Path 5: Faith-based disabilities ministries
- 06:22 – Path 6: Universities and community colleges
- 07:19 – Path 7: Rebranding job postings
- 08:08 – The golden rule: Build a bench, not a single hire
- 09:01 – Closing thoughts and where to find more help
Frequently Asked Questions
Is ABA therapy available for autistic adults and not just for children?
Some ABA providers do work with adults, though availability is much more limited than for children. It’s worth checking with local behavior analysis programs or university clinical departments, since some offer adult services through supervised student placements.
How do I find caregivers who can handle aggressive behavior safely?
Look for people with existing experience around intense behavior respite workers, special ed paraprofessionals or students in behavior analysis and OT programs tend to be desensitized to meltdowns and trained in safe de-escalation. Hiring for a calm, steady temperament matters as much as formal training.
What if there just aren’t enough services in my area?
This is unfortunately common, especially outside major cities. Building relationships with local colleges, faith communities and other special needs families can help fill the gaps that formal agencies leave open, even if it takes longer than you’d like.
How can I help my nonverbal or minimally verbal adult child communicate with new caregivers?
Consistency and familiarity go a long way bringing in helpers who already know your child, like school paraprofessionals, shortens that learning curve considerably. Written routines, visual supports or communication devices your child already uses should be shared clearly with every new caregiver from day one.
How do I keep good caregivers once I’ve found them?
This is such a big topic that it deserves its own conversation. Mike’s tackling it in the very next episode, since keeping great help can be just as hard as finding it in the first place.
Transcription:
Mike Carr (00:04): Welcome back to Autism Labs. Today I want to tackle what is the biggest mountain every parent of a high-support-needs child has to climb: how to find great help. I personally know this pain deeply, from over 30 years of navigating life with our own profoundly autistic, nonverbal son, Michael, who has seizures, spikes of behavior, and all kinds of other challenges. Finding consistent, reliable care has been by far our toughest challenge. When Michael was little preschool, grade school family members were our lifeline. But as our child grow into older teens and adults, that reality changes. Family love is unconditional, but family members aren’t equipped to handle the intense, sometimes aggressive behavior Michael exhibited pinching, kicking, biting, even punching in a safe, clinical way. At some point, moving from willing family to trained, committed staff simply becomes a necessity.
Mike Carr (01:09): So how do we find them? Before we look at where to search, let’s talk about who to search for. Autism Speaks notes that a great helper doesn’t always need a perfect autism resume. Sometimes it’s better to hire for temperament someone teachable, patient, and flexible rather than someone who comes in with a resume assuming they already have all the answers. Because, as we all know as parents, they don’t know what makes our kids uniquely challenging and uniquely special. That said, our own experience has shown that starting with people who already have some real experience saves an immense amount of time. We want people already desensitized to sensory meltdowns and aggressive behavior, who understand what real patience, repetition, and safety actually look like.
Mike Carr (02:05): Here are seven paths to build your care team. We’re combining national resources with some of our own hard-won discoveries. Number one a national resource, since you all live in different places: ARCH’s National Respite Locator Service. Go to archrespite.org (A-R-C-H, “respite,” all one word, dot org). They have solid resources for most, though not all, states, since every state handles Medicaid and respite funding differently. Still, it’s a good launching pad. We’ve also found that people with respite experience and training often make great, reliable colleagues for after school, weekends, or when you want to take that long-overdue vacation.
Mike Carr (02:55): Number two is one of our secrets: climbing centers. I know this sounds a little unusual, but bear with me it was a game changer for us. Rock climbing culture is built entirely on patience, tenacity, and mutual trust. When you’re belaying someone, you’re literally holding their life on a rope. We’ve found that climbers tend to be incredibly patient, flexible, and adaptable. At places like Crux Climbing Center here in Austin, some climbers have even rearranged their schedules to show up when Michael and his buddies are there, as part of our John 13 community program. Several were interested in making extra money, and when we hired them privately, they turned out to be phenomenal, high-energy caregivers.
Mike Carr (03:50): Number three: parents you already know. This one comes down to mindset. You need an abundance mindset, not a scarcity mindset. Scarcity says: I’ve found this great caregiver for my son, and there’s no way I’m sharing their contact info with other families I need every hour myself. But here’s what we’ve learned, these caregivers actually like variety, and they enjoy meeting other families with similar needs. If you team up with another special needs family or two, your helpers can work together. That builds camaraderie, gives them social interaction they genuinely enjoy, and creates built-in redundancy. It prevents caregiver burnout and gives you extra support exactly when meltdowns happen.
Mike Carr (04:37): And meltdowns do happen, however infrequently. You need a team ready to go. Number four: special ed paraprofessionals and aides. I want to be clear that special ed teachers are a great resource too, but they’re often more expensive. Paraprofessionals and aides can be a more affordable option. Especially during school holidays, and especially during summer break which has already started here in Austin these folks are the unsung heroes of the classroom. They’re already background-checked by the school district, crisis-trained, and used to doing the difficult, hands-on work. In many cases, they already know your child, so you’re starting with a level of trust already in place.
Mike Carr (05:37): Number five: faith-based disabilities ministries. Some churches, synagogues, and religious community centers run specific ministries for this population of people with more intensive support needs. General volunteers often aren’t ready for the intensity of behavior our kids can exhibit at a profound or severe level. But within these communities, you’ll sometimes find someone with real lived experience, a sibling, cousin, niece, or nephew with similar challenges who already understands what that level of support looks like. When you find these people, they often bring a deep, intrinsic motivation to help.
Mike Carr (06:22): Number six, and honestly one of the most important: universities and community colleges. When you go after these folks, don’t just post on the general college job board. What’s worked best for us is reaching out directly to department heads and professors special education, nursing, psychology, occupational therapy, speech therapy. We’ve found incredible people through the University of Texas here in Austin, through their speech therapy and nursing departments, even kinesiology, plus special ed and behavior analysis. Position it as a paid job with hands-on clinical experience not babysitting. When we partnered with professors, we were able to offer students course credit for a semester working with our son. They came into our home, collected behavior data, worked directly with him, and presented progress reports to their professors and classmates. It’s also an incredible way to discover the students who really click with your child, the ones you can then hire once the semester ends, or on weekends.
Mike Carr (07:19): Number seven: rebranded job boards. We’ve used Craigslist, Indeed, and specialized local boards, but you have to start with something other than “babysitter.” You’re not looking for a babysitter you’re looking for something more challenging, and the job title should signal that. Titles like Direct Support Professional (DSP), Behavior Support Aide, Autism Respite Worker, or Community Support Companion tend to attract the right kind of applicant and save you a lot of wasted time.
Mike Carr (08:08): Now here’s the golden rule, and it might sound tough, but it’s critical: you are not looking for one single savior to rescue your family. You are building a bench. Ideally, that means one or two lead helpers who can back each other up, one or two occasional weekend respite providers, and an emergency backup option even if that backup is one of the family members we talked about earlier. If you’re listening to this feeling exhausted, overwhelmed, and like there’s no way this could work for your family, find hope in this: we’ve been doing this for over 30 years. We’ve hired hundreds of helpers, all ages, all backgrounds. It hasn’t been easy, but these people are out there. It takes time, it takes persistence, it takes turning over a lot of stones but these professional, compassionate, rock-solid human beings do exist, and they may be genuinely excited to meet a family just like yours.
Mike Carr (09:01): So keep searching. Build your bench, piece by piece. And remember you do not have to walk this path alone. If none of the resources I’ve mentioned help, or you need more guidance, email me at mike@autismlabs.com that’s Autism Labs, all one word. I’ll try to point you toward another resource. And if you’ve found solutions I haven’t mentioned, let me know I’d love to share them in an upcoming episode. Next week, I’m going to talk about how you keep these people once you’ve found and hired them. Believe it or not, that’s just as big a challenge, sometimes even bigger than finding them in the first place. Stay tuned, and until then, have a wonderful and blessed week.
Mike Carr (09:46): See ya.
