Today’s post is very close to my heart. Since, it is the Autism awareness month; I want to share my experiences working with autism and as always a few tips. This is a long one guys! So grab your popcorn and let my story unfold.
My first job as a speech language therapist was for Dubai Autism Center, one of Dubai’s oldest and prestigious institutions. Being a fresher, newly out of college , autism to me was a condition that had little prognosis and I hardly knew how to conduct my sessions. Yes, that’s true! And I am sure so many SLT’s out there agree too.
Today, one of the most progresses, I have achieved in my career is working with children with Autism Spectrum Disorder (ASD) and their families. Working with these incredibly gifted and unique beings have taught me patience, presence and persistence.
In the past decade, autism has gained a lot of media attention in the form of movies, documentaries etc which has created quite a stir. In a good way, it has helped increase awareness in families. Parents are being more proactive by looking for early signs. On the flip side, it has also created anxiety amongst parents who are quick to “Google” and diagnose their children with autism.
I’ve had families who come to me with their diagnosis. Basically, they want me to seal the deal. Nevertheless, it also shows that parents are aware of a language or speech difficulty. Either way they are asking for help and reassurance.
So, let’s dive in…
What is Autism?
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is the standard reference for diagnosing autism.
Autism Spectrum Disorder is:
Persistent deficits in social communication and social interaction across multiple contexts;
Difficulty to have a smooth back and forth conversation, understanding body language of others, maintaining eye- contact, difficulty adjusting behavior to the social cues and making friends.
Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following;
Stereotyped or repetitive movements with respect to objects or speech; like lining up toys, echolalia (repeating what is being asked, For e.g. ‘What is your name?’, the child repeats back the question, instead of answering the question).
Insistence on sameness meaning likes routine of day to day activities. Any changes, transitions (moving from one activity to another) or disruptions can be upsetting to them.
Highly restricted, or strong attachment to unusual objects. I used to have child who came to all my sessions with a toothbrush.
Hyper- or hyporeactivity to sensations. For e.g. They show aversion to the slightest touch from a person. However, at times there would a loud sound at home and they would not even flinch or blink. Excessive smelling or visual fascination to lights and movement.
The severity of each of these difficulties vary from child to child. Each child with ASD has their own profile of skills and abilities, and most importantly their own unique persona.
In my experience, working with ASD has been both fulfilling and frustrating at the same time. As a therapist, I want to see and show results. I can make a child request by repeating the instruction 200 times. That’s what theory says, lots of repetition plus modelling equals learning the skill. That’s how typical kids learn.
“Surprise! My brain does not work that way. I like to see in pictures. I like to know you better before I succumb to any of your demands. If you are patient, allow me to move around and show me exactly what we are going to do here, then we can move forward”.
Time and again, children with ASD have taught me this. Do not rush me. Be with me, know me and then teach me. Don’t you think we should all be aiming for that kind of quality in every relationship. I do!
Busting few myths about autism, that I have experienced:
- If my child flaps, he has autism– autism is a collection of signs that has to occur together, as mentioned above. Having just one of the signs does not make the child in the autism spectrum. In most cases, it is developmental. If a child flaps his/her hands looking at the parent with eye contact, then it is a way of showing their excitement. As they become older it goes away. However, if it is directed at an object that spins or rolls, then it is best to consult the professionals.
- All children with ASD have behavioral challenges– At the onset, it is important to stress that there is no inevitable link between autism spectrum disorder and challenging behavior. I’ve had children with severe challenging behavior to those who comply extremely well in sessions. Having any form of autism does not necessarily mean that they will end up with challenging behavior. It is because autism spectrum disorder has communication difficulties, which later manifests into behavior. Behavior is a form of communication, that should be addressed with teaching them skills and coping strategies.
- Having autism means having a deficit in their level of intelligence– On the contrary, there are lots of people in the spectrum who are incredibly gifted and talented known as high functioning autism. These people function and blend in the society so well, that they get a diagnosis later in life.
- Individuals with ASD are devoid of emotions– This is the biggest bummer. They all feel emotions just like us. They have difficulty to regulate it. How and when to use their emotions.
Primary professionals involved in the diagnosis of autism:
- Clinical and Educational psychologists
- Developmental pediatrician
- Special educator
- Speech language therapist
- Occupational therapist
- Applied Behavior Analyst
Useful screening tools and websites:
This is an online screening tool that is free and accessible to all. You answer a set of 20 questions, based on your observation of the child. At the end, when you receive the results, it will show you the if the child falls under high risk/low risk/no risk. Based on the results, you can decide to meet professionals.
- Uniquely Human by Barry Prizant– This is a gem of a book. Great for parents. #scerts#barryprizant
- The Reason I Jump by Naoki Higashida – Beautiful read into the workings of the autistic brain. #naokihigashida
- Temple Grandin– A movie about Temple Grandin, who has autism and she is one of the most well known authors, animal science specialist and strongest advocates for autism in the planet.
- Amy Schumer– The famous comedian Amy Schumer talks about her husband having autism and how delightful their marriage is, because her husband can’t lie.
Finally, my experience with parents. The Sheroes and Hero’s of children with autism spectrum disorder.
When I first started, I was in the ‘fixing’ mode. I wanted to fix the child and the parents. I felt I owed it to them, that I make myself useful in every way. However, I failed miserably.
Parents go through a cascade of emotions after the diagnosis. They enjoy fantasies of what their child will be like to prior to their birth, grapple with the reality of who their child is after birth, and entertain hope for improvement as their child develops (O’Brien and Daggett, 2006)
I am being very honest here. Parents don’t need saving. It’s not about me or my expectations for therapy. What they do need from us is ‘authenticity and empathy’ not sympathy. Truly and fully listening to them, with every cell in your body. Most importantly, acknowledging their hope and being hopeful at the same time.
I know few of you might think, but what about managing parent expectations. What if the parent has an audacious goal, that is not achievable according to you at this time. I get it, research
Vs giving false hopes. A parent is more than willing to listen to you and agree to your side of the story, if you ‘truly’ care.
This is a good reminder for us, that I read in one of the books.
“It is important to remind ourselves as therapists, we have chosen this field. We consciously decided to work with this population of children and their parents. We pursued education, applied for our jobs, accepted a position and began our work. We chose to function in this world of disability and we can leave anytime. Families of the children we work with, however, woke up one day to an unimaginable reality and found themselves plopped in the middle of the world – Karyn Lewis Searcy, Speech Language Therapist and Author of Here’s How to Do Early Intervention”
Following are the tips we can follow to support the parents: Adapted from ‘Here’s How to do Early Intervention’
- Listen and be sensitive to parental cues
- Offer concise and simple information- repeatedly
- Be accepting and nonjudgmental
- Create a list of priorities with parents
- Reinforce parents attempt to engage and interact with the child
- Coach parent in interaction
- Help parent experience positive engagement rather than showing how well you can engage the child (This is important)
- Establish goals and observations with parents
- Determine and see what helps the parent engage and stimulate with the child. Each family is different and they should be treated that way.
- Be aware of your own reaction and do not personalize anger
So, there you go. This has been one of my longest post, since I started this blog. When something is close to your heart, you have lots to say and it has an emotional journey to it. I am grateful to every child with autism spectrum disorder and their parents that I interacted. They have been my best teachers.
While I was writing this blog, I also realized that there is so much to learn from Autism. Like having a proper routine in life, not being a people pleaser and most importantly not lying. Being truthful and to the point!
Hope you enjoyed reading this. I have thoroughly enjoyed myself writing this.
- Here’s How to Do Early Intervention- Empowering parents by Karyn Lewis Searcy
- Challenging behavior and autism by Philip Whitaker