April is Autism Awareness Month, and yesterday was specifically a day dedicated to autism awareness. I felt compelled to write something down, because I work with autistic children every day and they've impacted my life in the most humbling way. You see, I've been a speech langauge pathologist for almost 18 years and my journey from what I've learned has come so far.
18 years ago, when I graduated, I knew very little about autism. We were taught person first language and it was always "people with autism." I knew communication skills were low and I thought cognitive functioning was too. I knew there were social skill difficulties, little eye contact, difficulty with turn taking, language development. I knew the prevelance was around 1 in 150 or 200. Back then, it wasn't as high as it is today.
In my 2nd year, we moved to Indiana and I began my work in the public schools. I distinctly remember evaluating my first client with autism. He was turning 3 and entering the public school system. His mom had started him on a gluten-casen free diet and he had a few signs and no spoken language. We wanted to place him in our developmentally delayed preschool classes that were language enriched and he would receive speech and occupaitonal therapy services. His parent did not want to enroll him in that class and instead enrolled in him in the Ball State Child Study Center, something we as a team disagreed with. That limited his therapy, and I saw him on consult once a month, and he was making progress. Eventually I started seeing him more often and his mom would bring him to me. By the time he turned 5, he no longer met the school's criteria of having autism.
We know there isn't a cure for autism, but that child would have made me believe different. Either his wholistic diet and other methods worked or maybe he was wrongly diagnosed. But he his language had blossomed. He could play a game and take turns, and he just didn't need services as defined by the school at that time.
We eventually moved to Oklahoma and I began to work in the public schools again. I had twin brother's on my caseload with autism, and they were likely the 2nd "case" that stood out to me. They were vastly different. Very bright, but the demands of the classroom were becoming increasingly more difficulty with each passing year leading to more outbursts and breakdowns. We also didn't provide 1:1 aids and had recommended a different classroom setting. Their mother was adamant that they remain in the general education setting. She advocated so strongly for them. They eventually moved out of the area, but professionally, they had impacted me.
I once took a continuing education class from the Oklahoma Autism Center and I learned so much about their principles. I didn't know at the time, but we were taught they the classes/program were led by speech pathologists, and there were aids. The children were essentailly taught ABA (Applied Behavior Analysis) principles and progress was being made. And I thought, "what a wonderful thing tto be doing!"
In time, we moved to Texas and I received the position I'm still in today, although it looks different now than it does 5 years ago......
Because I had school experience I was placed in a school for autistic students who also received ABA services at school. I co-treated many of my students with their ABA therapists. My therapy looked like drilling language principles, giving rewards, sticker charts, breaks. It was very mundane as we sat at a table and drilled concepts.
I loved the idea of these kids getting to learn in custom classrooms with teachers and aids, and ABA therapists present. It was a wonderful set up. I met some amazing therapists. Truly. I had one client whose mother was a therapist as well, and I will forever be grateful for my time with them. I'm still online friends with several of my co-workers from that time and I know they mean so well.
During that time I also witnessed some of the saddest moments. When a child was in meltdown, there was ignoring of the behavior. I remember kids being in "safe areas" and adults would turn their backs, not giving attention to the tantrum. I heard of a child locked in a bathroom all day for his refusal. I saw my desk cleared of items because one student threw a flashcard down because he didn't want to do it. He was then placed in a hold on the ground because he didn't want to clean up the mess that he didn't make.
My heart broke.
I wanted to believe in the well being of it all. I wanted to believe that what these trained therapists were doing worked. I wanted to believe that these children would grow up and be well-incorporated adults in to our environment.
I eventually moved away from the school and back in to a private practice setting and I was relieved. I started to dig in as most of the clients I evalauted were autistic. I learned that autistic adults now preferred disorder first language. Autism is a part of them. It is not a disorder that needs fixing.
I jumped in to online forums and learned as much as I could from other therapists. I learned about sensory needs. I learned about play based therapy. About augmentative communication. My mind was opening in all of these amazing possibilities.
I've had so many clients that taught me more than I could ever teach them. I had one client who was so musically inclined. He would watch "Let It Go" on You Tube and slow the speed down or speed it up. I didn't even know you could do that on You Tube videos! He would listent ot he music. He would watch movies that were on my ipad and change them to other languages. I would just watch him explore on his "breaks" and be in so much awe.
When his family moved away and I had to say goodbye. I cried. That child really opened my eyes that autism wasn't something that needed to be fixed. It needs to be embraced.
I began learning about Gestalt Language Processing. Autistic kids don't typically learn language in the way a "typical developing child" does. They can learn through music, television- and pick up on words and phrases that have meaning to them.
I moved away from the idea of picture exhange and it's principals of hand over hand and forced langauge to embracing augmentative communciation in my sessions.
I have therapists ask me "well, what if they throw a fit", and do you know since moving out of the school for autistic kids, not one client has had a meltdown that has been explosive. It's so rare. My clients are welcome to come in and choose what they want. We incorporate language through play rather than forced flash cards or drills.
I'm not saying any of this to brag on myself. I'm still learning so so much.
I'm learning every day about gestalt langauge, AAC, embracing stims rather than stopping them. Building trust. Slowly allowing myself to be present and engage in their interest and activities. I'm working on listening to autistic adults and their experiences, and doing things differently. I'm not writing goals to focus on eye contact and turn taking. The goal is not to change who a person is, but to embrace who they are and meet them where they are. I want to be an ally. I want to ask questions and learn and support families.
There's so much more that I want to share when the time is right. In time, that will come. I know that everyone working with autistic individuals is doing what they think is best. I just urge us to all listen to each other and to support each other.
To every client I've worked with- thank you for teaching me more than I could have ever learned on my own. To my current boss, thank you for trusting your therapists and giving us the opportunity to learn and embrace change, and our ability to collaborate with each other.
To parents of autistic kids- you're doing awesome. Remember that your chils is not broken. Your child does not need to be fixed. Your child does not need 40 hours a week of therapy. Your child just needs to be loved and supported. Dive in to the community and learn what you can and as any parent does, fully support your child where they are. I know you're doing that already. You love your child more than life itself. You're their person. Thank you for that.
