Podcast

Allissa shares her insights and experiences from working with massage clients on the spectrum.

Resources

Please note, I choose to say “Autistic people” over “people with autism” because in my experience and reading, that is the term Autistics prefer. See here and here.

• Tina Allen, Touch Therapy for Liddle Kidz with Autism
• NeuroTribes, Steve Silberman
• AMTA Journal, Breaking Through: Massage + Autism

Resources BY Autistics

• Autistic Self Advocacy Network
• John Elder Robison
• The Invisible Strings
• Just Stimming
• Aspie from Maine
• Giraffe Party
• Radical Neurodivergence Speaking

And there is a great blog from an autism mom and a HUGE list of resources in the sidebar here. 

Transcript: 

Sponsor message:

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Michael Reynolds:

Hey everyone. Welcome to the Massage Business Blueprint Podcast, where we discuss the business side of massage therapy. I'm Michael Reynolds.

Allissa Haines:

And I am Allissa Haines.

Michael Reynolds:

And we're your hosts. Glad you've joined us today for this episode. And I'm sorry, in advance, both Allissa and I are full of allergy season congestion. So I think we're going to make it but my nose is still kind of plugged up with all the change and season stuff. So, think you're the same boat, right Allissa?

Allissa Haines:

Yeah, I've got my really low Kathleen Turner voice going on and I've [inaudible 00:01:33] myself because all of our younger people are not going to know who Kathleen Turner is. So if you do know who Kathleen Turner is, thank you. And if you don't, you should go watch a good movie.

Michael Reynolds:

I don't think I ever know who Kathleen Turner is, so-

Allissa Haines:

My gosh... She's like-

Michael Reynolds:

Sorry.

Allissa Haines:

All right. I'll to have to do a thing on it and now I'm going to have to make some posts on Facebook, so y'all pay attention [inaudible 00:01:53] the next day.

Michael Reynolds:

So anyway, with that, let's jump right in. So today's topic is on working with autistic massage clients and yeah, I'll let you just kind of jump in now that you talk a lot about this in general. You have a lot of kind of affinity, I will say, for working with autistic massage clients. I think a lot of our listeners will be very excited to hear what you'd like to share. So, let's go for it.

Allissa Haines:

I hope so. And so I've actually tried to not say too much about... Well I've made it very well publicized for the past, I don't know nine years or so that I've worked with people with autism. When I get the question, what do I need to know? Or I've got an autistic client on the schedule what should I be aware of? I've hesitated to answer because I've always felt like I don't know enough myself, even though I've got a little advanced training, but I really... I've seen enough questions publicly in Facebook groups and stuff lately and I've responded enough. This actually happened where I responded to kind of a, what do I need to know? And I was like, "Oh, I do know a bunch of stuff." So, I finally got over my own little confidence issue, I guess, with it and put together a list of my thoughts that I typically share privately, but I've always hesitated publicly because I don't... I'm not an expert in pathology.

Allissa Haines:

I'm not an expert in human behavior. I can speak to this as someone who has done some work. I did a lot earlier on, it phased out for a little while or slowed down and I'm back doing more and more. And so with that caveat, I'm not an expert anymore than anyone else who's just got a little experience and I like seeking out the experts. And the second caveat here is, I will probably throw in a few stories of my personal experience. These stories are a mishmash of experiences to protect my client's privacy. So, know that these are general things and mishmash is of real stories, but I have some permission from some clients. They know I talk publicly about this and they're cozy with it but I didn't... I'm not going to be getting detailed about that today. So know that if you call me privately and we talk about this, the mishmash of stories could occur slightly differently. So this is not... JournAllistically I want everyone to be aware of [inaudible 00:04:21].

Allissa Haines:

Okay. So first I want to start in with a thing we most of us know is that autism is a spectrum. It is an issue, a neurological, I hesitate to even say disorder because... And all of this is a moving target to how we talk about and how we learn about and what we know about autism is changing daily. That's not an exaggeration, daily. And how we talk about it needs to be influenced by how the autistic community wants us to talk about it. And that is something I am in the process of learning. I want to make really... I want to... I know I'm going to say something today that is ableist and off target. And when I do that, I hope that you call me out on it in the comments because I am also learning how to be an inclusive advocate for this community.

Allissa Haines:

And I'm not perfect at it yet. And nor will I ever be. I am ableist and I do not have autism. And that of course colors how I talk about it. So, know that. Autism is a spectrum. There are varying levels of physical issues that go along with it, concurrent issues and especially varying levels of communication skills. A thing that I want to note, be aware that difficulty communicating is not an indicator of intelligence or ability. So, because someone cannot speak out or communicate in a way that we may understand does not mean that they are dumb or they are not able to understand what we are saying and trying to communicate. It just means that they might not be able to receive those communications in an orderly fashion or communicate out to us in a way that we can understand. The next thing I want to note is that adults have autism too, not just kids. And the adults autistic population is unspeakably underserved as our most disabled adult populations with any particular pathology or issue.

Allissa Haines:

My work now is mostly pediatric, although it's long-term. So, I think the client I started working with when he was nine is turning 21 this year. So, be aware of that. I refer to the autistic community that I work with often as kids. And I'm trying to clean that up now that that's changing, but keep that in mind that kids with autism grow into adults with autism and we need to be mindful of changing our vernacular because an adult client with autism should not be referred to as a kid. An adult with any particular issue and it's really important to remember that a child with autism grows into to be a young woman or young man and then an adult. And that's important to be mindful of, especially when you're talking about a population that has historically been referred to as diminished in intelligence, which is not always the case in this spectrum.

Allissa Haines:

So, there's that. The first question is, do you need a special class? No, you don't need to take special education to work with the autistic community. You should, if you plan to specialize it, if you've got a real interest and if you want to know more but the reality is that most of us get into this work as we get into most of our specialties, as we start with most of our specialties, because we've got a client or a friend who has a friend or a family member on the spectrum. We tend to do this on the fly. That's how we find things that we want to specialize in. And that's okay if you're a mindful practitioner. There are situations that walk in our door where I would say you need special training absolutely. A lot of people start doing pregnancy massage without additional training.

Allissa Haines:

I don't necessarily think that's a bad idea if you're a mindful practitioner, but if you have someone with a pregnancy or with multiples and they're high risk for a variety of factors, someone without advanced training should not work on them. And I feel the same way about the autistic community. Most mindful, confident, well-educated with their base education, practitioners can handle a client with autism that walks in your door. But be mindful that there are often many concurrent issues that you may need to do a little more legwork to learn about. So, in general do you need to have a special class to start working with this population? No. But it's not the worst idea ever. So, keep that in mind. Concurrent issues. There are... Again, autism is a spectrum and there are concurrent issues one that often get misdiagnosed as autism or get purposely diagnosed as autism so that the client can receive certain resources and services within a school system or a publicly available or through their health insurance.

Allissa Haines:

So, concurrent issues are really important. So we're talking about sensory processing, digestive issues, hypotonic or chronically hypertonic muscles, very specific muscles, depending on the client, anxiety, apraxia, sleep issues, seizure issues. And we need to be aware of that to safely and helpfully work with this clientele. Safety-wise, you... It's important to consider... So, if a client walks into the office or a parent or a caregiver calls and says, "I have this 21 year old with autism and here are the issues that we're seeking: massage, sleep issues, digestive stuff, some sensory issues, is massage safe?" We need to learn more about all of these concurrent issues and also consider safety in the range of what are the other activities that this person participates in. Are they going to occupational therapy? Are they going to physical therapy? Are they involved in any kind of, in school, a gym class or a fitness or wellness.

Allissa Haines:

So, when you talk to the caregiver or whoever is calling you and also the client, once they're in your room, we'll get to that, what are the other things that they are doing? What are the other therapies they're having that might relate to massage and indicate if massage is safe for you? And of course, if there's a concern you want to talk to a primary care provider or their neurologist or... Just know that the caregiver has done that and you have the okay. It might even be that the physical therapist has suggested massage. The neurologist may have suggested massage. These are concurrent questions that you want to ask to figure out massage safety. And we could do a whole class on this, and I'm not... I don't know that I'm qualified to, but these are things to help you determine if this client is involved in a swimming program or involved in some kind of fitness program and they're doing occupational therapy where another practitioner is laying their hands on this person safely, that can help you make the decision about what's safe.

Allissa Haines:

If the parent or caregiver is providing some level of massage, more often than not massage is perfectly safe, but do your homework on this, of course, and don't take my word for it. And that kind of brings me to the next point, which is typically the parent or caregiver is an expert and or advocate for your client's care. They're likely going to come in with a printed out list of medications, of concurrence pathologies and issues. So, you'll find that your intake forms are never more fully and completely filled out than when you have a new client on the spectrum because it is sad and unfortunate that in order to get proper medical care or proper education and proper resources, parents and caregivers for autistic young people have to be vehement advocates. And they know a lot. They become experts in their ward, their child's care.

Allissa Haines:

So, with that said, actually I'm going to jump ahead a little bit. I decided my notes were out of order. You want to get the intake ahead of time. You want to look things up so you know what you're talking about. For example, I had a new client a couple of weeks ago and on the intake form was global apraxia. And I know in general what apraxia is, which is very vaguely. When there's no problem with the muscle structure and yet someone's not able to utilize their muscle in a certain way, look I did not know what global apraxia meant which was more like it applies to multiple areas of movement and function. And that is the rough.... I had to write this down because my memory is pretty bad at that, but I had never really heard that term that way before and I had to look it up.

Allissa Haines:

So thank goodness I got the intake form because I have an online intake form that I emailed ahead of time. I got it a day ahead. I was able to spend some time looking through it, making sure I had an idea of what was walking in the door so I could feel confident. And something else came up in... When they came in the door and I was like, "Yeah, I want to look that up real quick." And I did. And they were cool with that. And any caregivers going to only appreciate that you take the time to do that. Plan a few extra minutes for the first appointment so that you can let your client explore your massage room. If you've got a nine-year-old, who's super curious about everything they're going to walk into your massage room and want to touch and explore everything.

Allissa Haines:

And you want time for them to do that. And it's time for you to talk to and get to know this person without feeling the pressure of the clock ticking. So there's that and this is a good time for our halftime break, which applies great. Our halftime sponsor today is Body Support Systems. The bodyCushion, which is a high-tech high-quality body positioning system that allows a person to lie face down, face up or on their side without unnecessary pressure on soft tissue areas. And not long ago I had my bodyCushion system in my room hanging on some hooks or on a shelf in my room. And when a new, young, autistic client came in, he was like, "What are those?" And I got to pull them off the shelf and we played with them and it was like a great toy in your room, which bodyCushion system is not a toy.

Allissa Haines:

However, it was great for getting to know my client cause it was a thing they wanted to explore in my room. I use my bodyCushion system for pregnancy massage. I use it on lots of different people, even non-pregnant people for sideline. And I found that it's a really huge competitive and promotional advantage over just stuffing pillows everywhere and it's much easier to store. So, that is my stick on the bodyCushion system. And we thank them for being a partner. And just for being a listener of this podcast, you can save $200 on a bodyCushion system through the massage business blueprint package. So you can go to massagebusinessblueprint.com/bodyCushion and get $200 off your bodyCushion system, which is a kick-in deal that you're going to feel good about for years.

Michael Reynolds:

And I want to add one thing on that if I could. We have... Officially, that promotion ends May 1st. We have asked them if they will extend it. I can't guarantee they will. They may not. So, if you're thinking, getting a bodyCushion, just know that officially, that deal ends May 1st. We will do our best to see if they can extend it, but hey, no guarantees. So, you might want to jump on it.

Allissa Haines:

All right. So, let's pop back in. So let's say, you've got a new autistic client. They filled out an intake form ahead of time or not. We're all doing the best we can here. And they walk in with their caregiver. For the purposes of this example, we'll say we have a young teenager client. They walk into your office. And the first thing I want you to know is that you need to talk to the client, not the parent or caregiver. And I'm just going to say parent for the rest of this example because I'm tired. Words are hard. Even if the client is non-verbal, even if every question you ask to the client the parent answers, address the client. We're talking about... And, oh my gosh, especially if you're dealing with an adult, but even if you're dealing with a child, so often kids and disabled adults get talked through and we, again, assume that non-verbal means non-comprehending.

Allissa Haines:

And that is not the case most of the time. And even if it is the case, you want to create a feel and an environment that the client is being treated with the assumption that they can hear and understand. And the parent is just there as a sort of interpreter. Sometimes you will need to ask the parent a question and I say frame it in a way where you're asking the client's permission. So, you want to know how the mom or dad massages the child at home because they've told I give this kid massage on a nightly basis. You say, "Is it okay if mom tells me about how she massages you at home?" It is really important, especially long-term in your practice if you're treating kids who will grow into adults, it's a switch we have to flip in our brain sometimes. How you address the client needs to be so respectful and client centered, not parent or caregiver centered.

Allissa Haines:

And that goes for all pediatric care and all care in general. But I think we need to be especially mindful of this when we're working with anyone with any kind of disability or especially a communication issue. That client needs to learn to know and trust you. And they're not going to do that if all you do is talk to their parent and treat them like a piece of meat that you're supposed to massage. So, be real mindful of how you talk to clients and that you talk to clients because the client is your client, not the caregiver. And you need the client's trust. Yes, you need the caregiver's trust too. But any quality parent and caregiver is going to recognize that you do that. They're going to recognize that you're addressing the client and not them. And they're going to love and appreciate that because a big issue with parents and caregivers, especially in the autistic community, is that you have to teach someone to be their own advocate and that's a long-term process.

Allissa Haines:

So, be an advocate in that and help them do that by addressing your client directly even if the responses tend to come through the caregiver. Next up, never ever do anything you've been asked not to do. Ask permission before you try something new for your client. Again, trust is crazy important. Don't try to convince or cajole a client into receiving massage even if the parent does, just offer options. You meet this kid and they maybe poke around your office a little bit and you're talking to them and their parent about massage, demonstrate. Put a doll on your table and demonstrate how you give massage. Have the parent get on the table and demonstrate. If you've got a kid who's scared, do not push them, simply demonstrate and show them and say straight out, "You don't have to get a massage today. This is okay. If all that we do is I demonstrate for you. That's okay."

Allissa Haines:

Make it okay. Lay that groundwork. And maybe this is something that you've talked to the parent about ahead of time. The first visit let's just come in, let's give you 45 minutes of my time. I'm only going to charge you for half an hour or say, we've got a half an hour, maybe 10 minutes of that will be massage, maybe not. Caregivers are going to understand this and you don't need to feel bad about that. It takes... Building a therapeutic relationship is really tough, especially when you... Or it can be tough. It can be super easy too. But especially when you're dealing with a population who has undergone various types of therapy that may have diminished their trust in providers. So you want to be real nonmedical about it.

Allissa Haines:

You want to be real welcoming, real slow, real trustworthy and not to convince or cajole. Simply demonstrate if you need to and be real aware that it's a process. It could be that this kid only lets you touch them for five minutes and that's okay. And we're going to get a little bit more into actual process in a minute but be mindful of that. So, nitty gritty, you want to be super sensitive and really flexible with your environment and your massage techniques. There are just no guidelines that apply to everyone every day. And this, it makes me nuts when someone says I've got a new autistic client coming in, I haven't done much work with this community what do I need to know? And you'll have 10 people say, "People with sensory disorders really love deep pressure. People with sensory orders love heat." And I got to tell you, in my experience, that's not true.

Allissa Haines:

It's common myth and wisdom. Not always true. There are no guidelines that apply to everyone every day. So here are my suggestions. Be really sensitive and really flexible, move slowly. Don't be moving around like lightning. You want to move slowly, especially when you're dealing with people with sensory processing disorders who are very sensitive vision-wise to light and motion, who are sensitive to heat or cold, who are sensitive to sound. So be really mindful of all of these things. So, especially when you have a new client coming in, until you know about their music preferences, their white noise preferences, their heat and cold preferences don't.... I did my lights a little, I turn off my white noise machines. I turn off or down my music, turn off my table heat. I have heat ready. I have hot towel [inaudible 00:23:00] filled with Mother Earth's pillows.

Allissa Haines:

So I've got heat ready at any time. If they like heat, if they like weight, but you need to be super agile about your environment and also your skills. And you're going to ask these questions. Do you normally like heat? Do you have a weighted blanket? That tells me if they're going to want heat or especially if they're going to want one of the big heat wraps I have that are very heavy. If they don't, then I will not do that. I usually have an extra heat pack around that's not hot if they just like weight. They might even come in with a weighted blanket or a weighted vest if that's their thing. Ask, do you like music? What kind of music do you like? I gave a half hour massage. I had a new client come in and he brought it on DVD or CD and I don't have a CD player.

Allissa Haines:

So I was like... And I said, "What kind of music do you like?" And he liked country western. So I was able to flip that on, on my iPod. I added like a Keith Urban album or something. And I also had Pandora and which I don't have the license for commercial use, so I didn't want to use, but I would have it in emergency. And I was able to play country music that he liked. So that worked really well. You got to be agile. And the next time they came in, they actually brought their own CD player in. I was like, "If I have the hookup, if you have an iPod, I just don't have a CD player in the office." They brought it in the next time. And I did the whole massage to Baby Einstein classical album, which was awesome.

Allissa Haines:

It was so fun. And he was so happy. So, learn to ask what they want. When a client is communicative or a caregiver can help you with that, now I know when he walks in the door, I say, "What do you want today?" And together we decide, do you want the fans on, do you want the music on, do you want a heating pad? What do you want massage today? Where do you want me to start? And I put my hands on real gently. And I say, "What kind of pressure do you want? Do you want light pressure today?" And I do a little demo of light pressure, "Or do you want a little deeper pressure?" And I don't just start pounding on them. I do a mild, deeper demo and they tell me what they want. But I've asked permission so it takes the fear away. And know that what someone likes one day can dramatically change, especially long-term.

Allissa Haines:

So I've been seeing a client of mine since he was nine. And he, as a child, didn't like his feet touched. Now he's 20 now and he's working. So he's on his feet. And a couple of months ago, I just quickly did one compression on the feet and he said, "Why don't you massage my feet?" And I was like, "I don't know. Why don't I massage your feet dude. Want me to do that now?" He's like, "Yeah, give it a try." So I did. And it turns out he loves foot massage and he loves really deep foot massage. Who knew? It never thought to me over the course of 11 years to check in on this. Do you still hate having your feet touch? No. Now it's something he needs and likes and it's helped him. So don't forget to re-offer stuff, especially when you're seeing a client long-term and that about wraps up my little primer and it's not everything you need to know, but it's a starter.

Allissa Haines:

If this is a community that you want to work with more, get educated, take a class. I took Tina Alan's pediatric autism massage class. There's a handful of other classes out there. There was a class at AMT National Convention this past year. And I... From Tammy Goldstein taught it. There's a handful of great teachers out there. So do some Googling, get educated, read a lot about autism. I recommend a book called NeuroTribes and I'm going to put all of the links to all of these things. There's going to be a huge resource list on massagebusinessblueprint.com/podcast. You can find this episode and I believe it is episode number 94 and I'll have a huge resource list. There's a great book called NeuroTribes. It gets into the history of autism and Asperger's. It is not written by an autistic author. I want to caveat that because my next suggestion is to read autistic writers.

Allissa Haines:

Don't just read stuff about people with autism. You want to read stuff by people with autism and I've got a list of blogs and also Facebook pages. Get comfortable being uncomfortable because the first handful of posts... There's a great Facebook page called Radical Neurodivergence, which I will link to. And sometimes her posts make me very uncomfortable because they point out how I have been ableist in working with the community and referring to the community. And I have learned so much from autistic writers and it makes me a better practitioner and a better person. So I...

Allissa Haines:

There's a real great mantra, nothing about us without us. And if you are supporting an organization that supposedly is working on education or advocacy for people with autism, maybe make note, if they do or don't have any autistic people in their leadership, talking to you, autism speaks. And if they refer to autism as a disease, it's something you want to be mindful of because the more we learn about neurodiversity, the more we are recognizing that's not an okay thing to refer to. That's a whole other thing, sorry, this has turned into a long podcast episode, but I think it's worth it. So we'll have a huge resource list for you. And Michael, I'm done.

Michael Reynolds:

Wow. I thought you said you had to kind of get over your insecurity of saying you're not an expert or whatever, but I beg to differ. This was really valuable information. So thank you.

Allissa Haines:

I hope so. I am an evolving advocate is I think [crosstalk 00:28:57] and an evolving practitioner as we all are.

Michael Reynolds:

Fair enough. This was really valuable. Thank you. So, well to our listeners, we will stop there and thanks so much as always for joining us for this and every other episode you've joined us for and all the future episodes you will be joining us for ideally. So, a reminder, our website is where all of our stuff is as our home base on the web. It's at massagebusinessblueprint.com. The ton of free stuff there for everybody and a premium member community as well, which is $9 a month. It is a steal for all the stuff you get. In fact, we've had members recently tell us we should charge more for it.

Michael Reynolds:

Currently, we will not be charging more for it, but I can't guarantee in the future. So, anyway, our members think it's worth more. So, check it out if you want to learn more. And if you have a topic you'd like us to discuss on a future podcast episode, email it to us at podcast@massagebusinessblueprint.com and we'll bring it up next time. So, continue telling your friends about us, if you would. We appreciate that. And we appreciate all the reviews you leave for us in iTunes as well. So, thank you so much everyone. We will see you next time and have an awesome day.