Autism Stories: Mae!
We’re excited to be sharing the second story of our Autism Stories blog series today! If you haven’t heard yet, this series at Always Keep Progressing will be giving voice to the diverse and lived experiences of individuals who have been diagnosed with autism, all around the world. If you missed the first blog, check it out here. Today, we’ll be hearing from Mae Sattler, otherwise known by her Instagram followers as The AutistiChick, who lives in Ohio. She’s “just an autistic, singing musician that loves destroying #autistic stereotypes.”
Note: Live interview with AutistiChick, from which this story has been transcribed, can be found on IGTV on the @AlwaysKeepProgressing Instagram account. During the interview, Mae also performs classical pieces and well-known theme songs for us on the violin.
A: Let’s just wait a little bit until some other people join [the Instagram Live].
M: I can help out with that. *Plays the Jeopardy theme song on the violin*
A: Can you tell us a little bit about yourself and your background?
M: Well, I’m originally from South Korea. According to Ancestry, I’m 97% Korean and Northern Chinese, and 3% Japanese. I just thought it was kind of weird that there’s just that 3% that’s Japanese!
A: When did you come to the States?
M: At four and a half months old on the dot. But I actually don’t know any Asian languages!
A: When were you diagnosed? Could you talk a little bit about that?
M: According to my mom, they were toying around with the idea when I was younger. I went through therapy then, but I don’t remember a lot of my childhood because it was very traumatic. I remember having meltdowns, four adult women holding me down while I was just screaming at the top of my lungs, but I don’t remember anything positive, as far as school goes. After that, I just kind of went with the flow, keeping the idea of “you’re just a little weird, shh, just go do your stuff.”
Finally, when I was thirty-something, I broke and had myself assessed. At the time, it started out with sensory issues – you know those carts that squeak really high in a grocery store or a shopping mall? I needed earplugs just to deal with daily life. And then, I needed deep pressure therapy with weighted blankets and stuff. I’d just gotten a job as a paraprofessional, basically a teacher’s assistant with special needs kids, and mine were almost all autistic. It just popped into my head: “Hey! You’re kind of like the students you teach.” I was like, “You know what? What could I lose except get an answer to a question I’ve had since I was 20?” So, in November of 2018 I finally got my answer. On the phone, she said that I have “Autism with signs of ADHD.” You don’t forget something like that.
I was like, “You know what? What could I lose except get an answer to a question I’ve had since I was 20?” So, in November of 2018 I finally got my answer.
A: So, you always had a feeling that you might be different?
M: Yeah. I never felt normal. *Shows her nails to the camera* Sorry, I’m the Queen of Random.
A: (After asking about her nails, which had skulls on them) It’s really interesting that you’d never been diagnosed, but you kind of had a feeling…
M: Based on what I know now, I was classic for what they used to call “Asperger’s Syndrome” growing up. I had interests like music and musical theater, performing, ghost-hunting, and storm-chasing – a very eclectic mix of interests growing up.
A: I think it’s really important that other people can hear about experiences like this, because, as you were saying, no one ever tried to get you the diagnosis when you were growing up and you had to advocate for yourself.
M: Exactly – not that I remember. I don’t remember being assessed as a kid, but the one thing I do remember about therapy was that they had me do one of those baby shape puzzles, but blind-folded. Unless it was an IQ test or something, why would you have someone put together a baby’s puzzle blindfolded? I remember that.
A: Do you remember what kind of therapy you were receiving?
M: No idea. I had a counselor at this place next to where I went to school, but I don’t remember the specifics. I only remember my childhood in that way because nothing ever made any significance.
A: Can you tell us about some ways in which you feel like autism has helped you excel, and maybe a little bit about how music has impacted your life and your experience with autism?
M: For me, when I get upset, I stim* by playing violin. I play the same song over and over and over again until I get it right. Sometimes, it backfires because I get even more upset that I can’t play it right, so I end up having a mini meltdown. But, then, I go back to play it, and I play it and I’m fine.
A: Okay, and that helps you to relax?
M: Yeah. It only works with slow songs.
"For me, when I get upset, I stim by playing violin. I play the same song over and over and over again until I get it right... It only works with slow songs."
A: How long have you been playing violin?
M: What I basically tell people is I’ve been self-taught for the last ten years. I started playing when I was 18. Even though I had three years of consecutive violin lessons at college, you can only get so far with half an hour per week.
A: That’s really, really impressive that you were able to learn how to play yourself! It’s not an easy instrument.
A: How did it impact you being diagnosed later in life? And how has knowing your diagnosis helped you?
M: I don’t struggle as much now. I don’t hide. I mean, every once in a while, if I’m in public I know I have to “mask.” I don’t necessarily want to, but I just don’t want to be stared at. I’ll try to get rid of excess energy or nervousness in a way that’s “acceptable.”
A: And you mentioned you worked with kids who had disabilities. Do you still do that?
M: Yeah. Of course, because of the whole virus thing, I haven’t seen my kiddos in months. It stinks, because they were my life; they’re like my own little kids. They take me for a ride, definitely, but I love those kids like my own. It’s a classroom full of boys, so they were always trying to make pictures for me, trying to see whose pictures are the best.
A: I’m sure you really miss them! I have to see a lot of my kids online for therapy now, too, and it’s just different. I miss being with them in person.
A: I have one last question for you. Could you tell us what has been your biggest struggle living with autism? What advice do you have for others who might feel the same way and are going through the same things?
M: My struggle is knowing when to show my true, authentic self, and when to mask. If you’re working with kids, you have to act professional. You have to “mask” when dealing with parents because in my experience, they don’t want to see another adult who is just like their kids. I think society is that way. But, when I’m just with my students, I’ll wear my bite necklace. If they’re feeling sad, I’ll ask if they need to chew on their necklace. They’ll say “no,” and I’ll say, “Well, I have one too, so it’s not like it’s weird.” They’ll still say no, sometimes, but they’ll relax a little bit knowing that an adult is just like them.
A: So, you’re saying – if the community were to share their stories and be more of a family, and were more willing to talk about these things, then maybe children with autism would not feel so alone.
M: Yeah! It’s like, we shouldn’t have to mask, but unfortunately, it’s the world we live in because people are very sensitive to “happy flaps.” People think it’s weird.
A: I agree! I think that’s definitely an issue in our society. There are certain standards of what is the “norm.” Just because you don’t exactly fit into that norm, doesn’t mean that you are weird. It’s what makes you unique!
Thank you so much to the talented and kind AutistiChick Mae for sharing your story with us. We hope that her story and her personal experiences can be a reminder to us to be kind to all of those around us, and to remind children with autism that they’re not alone – there are so many amazing, outgoing, and successful people like Mae all over the world who are just like them! Don’t forget to follow @theautistichick on Instagram to keep up with more of her nail patterns, musical endeavors, and fun everyday life!
*Stimming: 'self-stimulatory behaviors' which help give autistic people a sense of control, helping them to feel calmer and to cope with sometimes overwhelming sensory information.
Autism Stories: A Story from France
We here at Always Keep Progressing (AKP) are excited to announce the start of a blog series, Autism Stories, which we hope will give voice to the diverse and lived experiences of individuals with Autism Spectrum Disorders. These stories will be told through live interviews with either family members of those with ASDs or the individuals with ASDs themselves. Today, we’ll be hearing our very first Autism Story, coming all the way from France from Sasha S., the mother of a young, 11-year-old boy with autism. (For privacy, her son will remain unnamed.)
A Story from France
A: When was your son diagnosed?
S: A formal diagnosis came around three and a half years old. In France, diagnoses usually DO NOT come that early.
A: How did you initially feel when learning about the diagnosis?
S: Actually, it was a huge relief because he already had all the alert signs of Autism – no pointing, no words at 2, seemed to be deaf, did not answer his name, etc. Accessing the right doctor at the right time was the trickiest part. The delay between appointments in hospitals (yes, plural!) was a pain. It all started with an audiogram because he was “more likely deaf than autistic.” It’s the classic path for parents of children with autism in France.
A: What were the first signs of autism that you noticed?
S: I have two close friends with kids who are 2-3 months younger than my son (including a set of twins). We were all, of course, on the phone regularly chatting about our babies during the first twenty or so months. We still do. Hanging up the phone, at the time, I was thinking, “How come my son is so calm compared to their children? The idea to stuff a banana into the Blu-ray or into Mom/Dad’s shoes would never occur to him.” The more we talked, the more it became clear that I was not living the same mother-child relationship as my friends.
A: Tell us about some of the things he struggles with because of his autism. Also, share with us some of the things he excels in.
S: My son struggles mostly with changes. Everything requires anticipation and preparation so that no meltdowns occur as a result of sensory overload or nonsense-crisis. He excels in horse-riding and piano.
A: In your experience, what has life been like as a mom with a child on the spectrum?
S: He’s my firstborn, and will probably stay an only child, so I can’t compare to the neurotypical motherhood and lifestyle. I don’t know how to answer the question. It’s fine as long as I stay organized, I guess.
A: What are five words to describe your son? Why?
S: Fantastic, funny, tall, happy, and polite! I would not change him for a neurotypical kid. He isn’t broken, so he does NOT need fixing.
A: Why is it important for parents of children on the spectrum to advocate for their children?
S: When I speak in parents’ meetings or associations, I emphasize the need for parents (and, I believe, grandparents) of children with ASD to start training themselves, out of respect for the child. There are still doctors who tell parents to give up any hope of progress for their child – this is something I was told in my very first meeting with the assistant of our local doctor. Shouldn’t the health system help parents? Isn’t that its job in the first place?
In order to help my son, I became fluent in French Sign Language. He’s verbal now, but still uses signs. I’m also well-trained in Makaton, ABA, SACCADE, Autism Education and Teaching, and Autism in general. I read all the books on autism that I can get my hands on – in French, English, German, Russian, or any language. I think of it as my tool bag. I also do one training session a year, sometimes two if it becomes necessary.
I know many parents stuck in a phase where they’re trying to answer the question, “Why is my child an autist?” This kind of thinking is understandable – it’s a huge shock in anyone's life. However, the more useful question to me is, “Okay, my child is an autist, so what help and training can I get so that I am a proper parent to this child?” Autism awareness can help to empower parents.
A: How important is early intervention to you? What are the different disciplines of therapy that your child receives on a regular basis?
S: Easy one: early intervention is crucial. We began very early, even before diagnosis, because it’s a race against time. No point denying that.
We still do speech therapy, occupational therapy, and psychomotricity during the week. I expect we won’t stop anytime soon. He goes to school, too, of course.
A: How have you handled stress as a mom with a child on the spectrum, and what words of encouragement or advice do you have for other moms?
S: Yoga!!! My encouragement to other parents is the same that I was once given: Focus only on what your child CAN do. Meet up with other ASD, Down Syndrome, or special needs parents. Lastly, give lots of love and use lots of common sense.
Why Music Therapy is so Beneficial for Children with ASD
Almost everyone has experienced, at one point or another, the powerful influence of music – from feeling compelled to move our feet and dance when we hear a certain beat to feeling strong emotions when we listen to our favorite sad song. It’s no surprise, then, that music can be one of the most impactful and effective methods of therapy. Music-based interventions work because, simply put, music is like food for our brains.
Believe it or not, this isn’t just a cliché. Science has shown that music can be physically and biologically powerful, and musical behaviors of all kinds (playing and/or listening) can have lasting effects on our brain function. Studies have shown that music-based therapies are extremely effective in children with Autism Spectrum Disorders (ASDs) and other developmental disorders, as well as typically developing children. But what makes music so impactful for children with ASDs in particular?
The Development of Language and Communication
Musical experiences, like singing or playing musical instruments, clearly require both non-verbal and verbal communication between individuals. When the members of a choir sing together, they read each other’s gestures and body movements to stay together. When an orchestra performs, violin players make eye contact with viola and cello players, doing all but speaking out loud to communicate across the stage.
Music itself is actually very closely related to language. Both music and language are made up of complex acoustic information, and they require the use of attention and memory processes to understand. They both have a “hierarchical arrangement,” where the musical notes or keys that make up a song are equivalent to the letters or words that make up a sentence. This means that when a child with ASD learns musical skills, there is also an easy transfer of knowledge to language development.
Active music therapies, involving either singing or music-making on an instrument, lead to significant improvements in verbal communication skills, in addition to non-verbal and gestural communication skills, in autistic children. Musical training can also improve other skills of perception. This makes sense, because musicians have to be able to perceive even small changes in pitch, tempo (speed), and rhythm. Musical activities help children with ASDs with music and speech perception, but also with their expression of language. When children are able to take part in musical activities, they outperform other children on verbal memory, verbal fluency, and non-verbal reasoning tasks
Social/Emotional Development and Behavioral Skills
Making music in a group setting is one of the best opportunities to develop social connections with others. Making music in a group creates a shared purpose and a sense of togetherness in a way that other, non-musical group activities do not. It also provides an opportunity to learn social skills like imitation, social reciprocity, shared affect, and empathy, all skills that are often impaired in individuals with ASDs.
Even when we are listening to music, we can discern a variety of different emotions, like happiness, sadness, fear, or anger. A more upbeat song might communicate happiness to the listener, while a slower melody is sad. Making music is similar – when children with ASDs make music or sing, they convey the same range of emotions and foster empathy with their musical partners.
Social skills beyond emotional communication are also enhanced through music-based therapies. Eye contact, general engagement with others, and spontaneous initiation of social interactions can all be increased for children with ASDs through musical therapy. After interacting with others in musical ways, children are more likely to help others and cooperate with their partners in general, even when those cooperative interactions are not musical in nature.
Gross and Fine Motor Skills
Children with autism often have significant impairments in fine motor skills (like small movements in the fingers) or gross motor skills (like overall balance and coordination). All of these issues can easily be addressed using musical activities that are targeted towards practicing certain motor skills. Using the whole body in musical, rhythmic actions can provide great opportunities to enhance gross motor skills. Clapping along or walking to the beat of the music are two examples of synchronizing the body in this way, promoting motor coordination in children.
Fine motor skills can be targeted through various musical instruments, such as the piano or the guitar. As children with ASDs practice these instruments, they refine and coordinate tiny movements of the fingers and hands, addressing the fine motor delays we often see in those with autism.
Music’s Physical Effect on the Brain
Beyond behavioral changes, musical activities can also have a major impact on the physiology of the brain! Musical activities increase something called “brain plasticity,” in all people, not just those with ASDs. Brain plasticity, or neuroplasticity, is a term that refers to how the brain changes and adapts as a result of our everyday experiences. This type of flexibility is critical because it allows our brains to develop as we grow older, creating new connections between brain cells when we learn new activities or skills. When children receive musical training, even over the short course of a year, their brains undergo massive change, in the areas of the brain involved in the cortical motor system, the auditory system, and more. Major findings in the cognitive neurosciences have found that musical practice is generally associated with large increases in our structural and functional brain plasticity.
For children with ASDs, specifically, listening to or playing music can physically change connections in the brain in a positive way. One study using MRI images saw that music could increase physical connectivity between auditory and subcortical regions of the brain, as well as between auditory and motor regions of the brain. At the same time, musical activities could decrease the connections between the auditory and visual areas, which are often naturally over-connected in children with autism. These physical changes to the brain were paralleled with vast improvements in language production and social communication skills.
Music: It’s Enjoyable!
Music is an especially great way to engage with autistic children because musical activities are not intimidating. Children with ASDs, who normally have difficulties directly engaging with others can more easily initiate interactions when there is a common goal of making music together. A child with autism can also spontaneously explore various ways of making music – trying out different instruments or singing until they find their favorite activity.
However, generally, there is a more universal reason why children with ASDs tend to gravitate towards music and musical behaviors – it’s fun! Whether it’s listening to music or making music with others, music can be a very fun and rewarding experience for all involved. Children with ASDs, in particular, find musical activities enjoyable, perhaps because they have an enhanced musical understanding.
Music is an effective way to communicate with, engage, and reach children with autism. It can improve general communication skills, language development, social and emotional development, and gross and fine motor skills. It can physically cause long-lasting changes to the brain. And most importantly, it can be fun – like another form of play, something ASD children can engage in without feeling like it’s too much work.
Check out some of these research papers and other sources about the impact of music on the brain and children with ASD!
Clearly, this is a really great time to be a practicing SLP. Not only are the numbers of practicing SLPs increasing, but demand for the industry’s services is also growing radically. What are some of the factors driving this growth?
Increases in the number of K-12 students
Schools are the single largest market for speech-language pathologists. Children are screened for speech and language issues when they first begin kindergarten. A rapid assessment at this stage allows for the early identification and diagnosis of speech, language, and swallowing disorders in young children. SLPs assist children with vocabulary and communication development as well as a variety of other issues, including stuttering, cognitive-communication disorders like autism spectrum disorder (ASD), and difficulties swallowing.
Recent advances in healthcare have improved the survival rate of premature infants. These infants often need help with feeding and swallowing disorders, increasing the demand for SLPs in young children. Additionally, school enrollment continues to rise, according to the National Center for Education Statistics. As elementary and secondary school enrollment grows, including the enrollment of special education students, the demand for education services, like SLP services, is expected to increase.
Increases in the number of adults aged 65 and older
As people age, their need for medical care rises dramatically, including the need to address speech, language, and swallowing problems. Over the next 40 years, the number of Americans aged 65 and older will more than double, predicted to reach an unprecedented 80 million in 2040 (U.S. Census Bureau, 2017 National Population Projections)! An aging U.S. population will only continue to drive demand for speech-language pathology services.
Increases in health insurance coverage
The majority of speech-language pathology services are covered by private health insurance. Health insurance coverage reduces out-of-pocket expenses for insured individuals. As a result, the number of Americans currently covered by private health insurance directly influences how much demand there is for SLP services. Subsidized state and federal healthcare exchanges have expanded private health insurance enrollment since 2014.
Similarly, a growing portion of industry revenue is also derived from patients who are covered by federally funded Medicare and Medicaid programs. Healthcare reform has also increased the number of U.S. citizens who are covered by both government insurance programs. Changes to both private and public forms of health insurance have made coverage more available to American citizens, allowing more individuals the ability to access the speech-language pathology services they need.
From an expansion of the client base to economic improvements that enable those who need SLP services the most to afford them, now is the time when our SLP services are most needed. Demand for speech-language pathology services is higher now than ever before, and is only going to continue growing. It’s the best time to be a speech-language pathologist. So let’s do what we can to help the most people.
IBISWorld Industry Report: Speech-Language Pathologists in the US [https://www.ibisworld.com/united-states/market-research-reports/speech-language-pathologists-industry/]
National Center for Education Statistics: Elementary and Secondary Enrollment [https://nces.ed.gov/programs/coe/indicator_cga.asp]
U.S. Census Bureau Population Projections for 2020 to 2060 [https://www.census.gov/content/dam/Census/library/publications/2020/demo/p25-1144.pdf]
U.S. Bureau of Labor Statistics, Speech-Language Pathologists [https://www.bls.gov/ooh/healthcare/speech-language-pathologists.htm]