Tag Archives: autism

Making April Autism ACCEPTANCE Month

Events & Conferences, Therapist Resources,

Claire McCarthy

April brings the beginnings of warm weather. It brings more time spent outside and the return of the birds who went south for winter. It also brings Autism Awareness Month. Fundraisers are held for local and nationwide autism related organizations. Facebook and Instagram are full of memes, posts, stories, and quotes about autism. This is all great, but what happens on May 1st? What happens when the posts get buried under cute animal videos and the fundraising moves onto the next mission?

Now, don’t get me wrong. I think awareness is wonderful. However, most of the world is very aware of autism now. They know organizations exist for it. There are plenty of tv shows and movies that portray autistic characters. We see autism in the news. What we need to be striving for is Autism Acceptance. We need to be striving for a world where autistic individuals are valued as community members, coworkers, and friends. A world that values and honors autism 365 days a year instead of 30.

To begin the move towards Autism Acceptance, there are some key terms we should know.

  • Neuro diversity: a viewpoint that brain differences are normal, rather than deficits
  • Neurodivergent: people who have diagnoses such as ADHD, autism, OCD, dyslexia, etc.
  • Neurotypical: individuals of typical developmental, intellectual, and cognitive abilities
  • Ableism: discrimination in favor of able-bodied or neurotypical people

Most of us on this blog are familiar with autism. For those who may not be, it is defined as “a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior”. It is deficit based. There is nothing wrong with acknowledging the challenges seen in an autistic individual. However, let’s flip that around with a quote from NeuroTribes and define neurotypical: “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure.” Makes one think a little, doesn’t it?

To continue on a path of autism acceptance, we also need to target the myths around autism. One I hear all the time is, “S/he can’t be autistic. S/he speaks so well.” The DSM-5 and DSM-5-TR say nothing about verbal communication deficits in regards to autism. “Accompanying language impairment” can be added to an autism diagnosis, but having typical spoken language skills does NOT mean an individual is not autistic.

Another common misconception is that every child who receives an autism diagnosis must receive Applied Behavior Analysis (ABA) services and must be eligible for an Individualized Education Plan (IEP) when they reach 3 years of age. Yes, ABA is one of the few evidence based autism specific teaching methods. This research dates back to the 1960s when autism rates were 1 in 2,500 people. This research was done on individuals that would be considered “low functioning” and often had accompanying Intellectual Disability. Autistic learners needs to be seen as individuals the same way that neurotypical learners are seen.

That last paragraph brings me to another issue that gets in the way of autism acceptance- functioning levels. Parents and therapists are so quick to get caught up in levels. Many people think that a functioning level can tell you all about the autistic individual. One of the problems with levels, though, is that it makes it harder to see past the diagnosis. When someone is diagnosed with “high functioning autism” people have a hard time understanding their challenges, honoring how hard that individual works day to day to appear high functioning, and sees less need for services. When someone is diagnosed with “low functioning autism” people don’t see their competence, assume lower intellectual capacity, and lower their expectations for the individual.

What can we do as therapists, parents, family members, and friends to change from Autism Awareness to Autism Acceptance? A simple place to start is to change our vocabulary. Try to ditch “red flags” or “symptoms” and replace them with “characteristics” or “learning profile.” Don’t be afraid to use “the A word” in your every day life. Talk about individuals being autistic the same way you would talk about someone wearing glasses or having black hair. Encourage children to ask questions about themselves or others. Using statements such as “don’t stare” or “mind your business” inadvertently tell children that what the autistic child or adult is doing is “wrong” or something to be ashamed of.

Along the lines of observing behaviors, remember that all behaviors serve a purpose. A tantrum or “noncompliance” is not the child being difficult or trying to upset an adult. They are letting us know they have had enough, do not understand what we are trying to do, or do not understand why we are trying to do something. Self-stimulating behaviors should not be a target in therapies. These are physical needs to self-regulate and make sense of a neurotypical world. The more an autistic individual suppresses the need to stim the more the individual will need to eventually “get it out” and it will likely be in a way that is not fun for them or others such as self-injurious behavior or a meltdown.

Some people may be reading this and thinking, “But what about all of the challenges? What about those who may never be able to live independently or have challenging behaviors day after day?” This blog is in no way saying that these challenges should be ignored. In fact, that would be just as ableist as saying the positive characteristics of autism should be ignored. What needs to be thought about is that we are not out there to “cure autism” or “teach a child to look typical.” We are out there to make an autistic person who has challenges become an autistic person with as little barriers in their life as possible.

One of the best things we can do is to listen to autistic voices. Autistic adults and children can teach us more about autism than any study or textbook can even begin to. Families who have loved ones with autism are also a wonderful resource. If it hasn’t been said clearly enough, the best thing to remember is that autistic individuals are just that- individual. They will all have different thoughts, feelings, and beliefs in regards to THEIR autism. Autism Acceptance begins with understanding that and valuing each individual for exactly who they are.

Motor Interventions in Autism: Enhancing Participation and Function

Events & Conferences, Motor & Movement, Therapist Resources, ,
Dr. Jennifer Colebourn, MSPT, DPT and Dr. Julie Goff, MSPT, DPT presenters of The Role of Motor Interventions in Autism Spectrum Disorder.

The 2019 Therapro Saturday Seminar Series was launched by school-based physical therapists, Dr. Jennifer Colebourn, MSPT, DPT and Dr. Julie Goff, MSPT, DPT with their presentation: The Role of Motor Interventions in Autism Spectrum Disorder.

Jenn and Julie met at Northeastern University where they were pursuing their doctoral degrees. Jenn’s research focuses on motor interventions for Autism Spectrum Disorders. Her most recent work has been published in the journal, Pediatric Physical Therapy: A. Colebourn, Jennifer & C. Golub-Victor, Ann & Paez, Arsenio. (2017). Developing Overhand Throwing Skills For a Child With Autism: A Collaborative Interdisciplinary Approach In School-Based Therapy. Pediatric Physical Therapy. 29. 262-269. Julie’s research on improving gross motor skills in children with Autism Spectrum Disorders received Northeastern’s RISE award in 2016. In their practice, both therapists focus on a collaborative team approach to improving motor performance in children with ASD.

Attendees were given a comprehensive review of Autism Spectrum Disorder, including the DSM-V (2013) diagnosis as a Neurodevelopmental disorder. We learned that ASD is no longer classified on a “spectrum” but with levels of severity. The term “Asperger” is no longer used, but individuals with the characteristics formerly attributed to Asperger are now considered to be “high functioning Autism.” An alarming statistic they revealed was that currently 1.5 billion children in the US have an autism diagnosis. Jenn and Julie cautioned that diagnosing ASD is complex and in the past 5 years, neuroimaging has provided startling information about the difference in the brain of the child with ASD from a typical child, i.e. “neuro over connectivity” that impacts function.

Jenn and Julie addressed the fact that motor function of children with ASD is affected, usually with simple motor tasks being intact, but with complex tasks and motor planning being impaired. Motor difficulties are now considered a “Core Deficit.” Screening for motor deficits is important for all children with the ASD diagnosis. The PT’s role includes recognizing if a motor impairment interferes with function. Julie and Jenn cited a number of studies that examined how core deficits affect a child’s participation in physical activity across many dimensions. What we might see is a child who prefers simple, sedentary activities and who doesn’t participate in complex social activities such as organized sports. In summary, motor deficits affect a child’s ability to participate in play.

When providing treatment for the child with ASD, Julie and Jenn advocate strongly for a team collaborative approach that includes the child’s family members. They noted that the ABA therapist would be a strong, valuable ally because they can provide behavioral support to motor intervention. They discussed ways to design the environment and treatment sessions in order to help ensure success and motor learning. A few examples they gave were: promote positive transitions, simplify choices, and have a predictable space and schedule. A few materials they recommended include: Body Awareness Fun Deck, Upper Body and Core Strength Fun Deck, Magicatch Set, Rainbow River Stones, Learn to Move, Move to Learn!, and ABC Yoga Cards for Kids.

We are grateful to Jenn and Julie for sharing their passion and expertise for improving motor performance of children who have an ASD diagnosis. With improved motor skills, it is likely that other areas of function will be affected in a positive way as well. With the high incidence of ASD worldwide, Autism will affect us all. The need for continued research is critical to help our understanding and ability to treat children with ASD effectively.

Here are just a few of the attendees’ positive reviews of this seminar:

“Incredibly informative and relevant! Felt so empowered from the seminar. Helped to give me better direction in my practice as well as increased confidence in my recommendations to families & school staff.” – Laine F., Physical Therapist

“The two presenters were so knowledgeable in their area – facts were most interesting.” – Rolene K., Teacher

“Great overview of school PT and best practice for collaboration with all members of the team.” – Micaela M., Physical Therapist

“Presenters were professional presenting evidence based practice to help improve functional skills for students with Autism.” – Alice T., Occupational Therapist

Thank you, Jenn and Julie!

Filomena Connor, MS, OTR/L
January 12, 2018

Autism Challenges in Public Entertainment Venues

Community-Based Practice, Daily Living, Sensory, , , ,

Ironically, the reasons why we go to these venues are the reasons people with Autism do not like them! Here are a few challenges that may be faced in public entertainment venues:

  1. Sensory: People with Autism often struggle with sensory input and how to deal with it.
    • Many of these venues may smell strange (or someone may be wearing perfume) and cause a negative reaction for some people. This can be so subtle that the person with autism may not even know that it is causing him/her to act out of control.
    • Sudden and loud chaotic noises can cause confusion for them in addition to all the chatter and background music in the room.
    • Sitting too close to other people can cause unwanted light touch that we know can be very irritating. Speaking of touch, a theatre setting may have textured chairs that are uncomfortable
    • And not to mention all the visual stimuli that occurs – all the bright lights, some moving and others flashing can put a nervous system into overload.
  2. Social Skills: These venues involve social environments which is an area of real challenge for people with Autism
    • They may be highly anxious in knowing how to interact with the rest of the group.
    • As a result they may seem aloof or, on the other hand, blunt.
    • In an attempt to communicate, they may not be able to read the body language or facial expressions of the other person and then their behavior may appear to be inappropriate.
    • People with Autism take things very literally which may cause misunderstandings with others at the venue.
  3. Routine and Anxiety: Routine is very important for people with Autism
    • Going somewhere new outside of routine can cause a lot of anxiety.
    • Even if a person with Autism is used to going to a venue each week, even the absence of a staff member, different layout, etc. could cause anxiety.
    • Unexpected events are anxiety producing for them.

Other diagnoses that might experience similar challenges:

  1. We as occupational therapists working with people with developmental disabilities are trained to assess their ability to process sensory information as part of their evaluation.
  2. We are finding that many people with no known diagnoses also have challenges with entertainment venues. Recently, I have been privileged to attend professional baseball games in Baltimore, Philadelphia and San Diego. That venue has changed since I went to baseball games as a child – now there is loud music, flashing lights, huge TV screens and people getting up and stepping on your toes which all make me wonder why I am there. It is challenging for me!

Suggested Solutions

Preparation, Preparation, Preparation:

  1. Social Story:
    A social story can be a written or visual guide describing various social interactions, situations, behaviors, skills or concepts and were introduced and described by Gray and Garand (1993). They are designed to improve the social skills of people with autism spectrum disorders (ASD). Social stories are used to educate and as praise. Social stories model appropriate social interaction by describing a situation with relevant social cues, other’s perspectives, and a suggested appropriate response. About one half of the time, the stories are used to acknowledge and praise successful completion of an accomplishment. These have been used successfully in preparation for entertainment venues. For further information, Therapro, Inc. offers the Newly Revised Book on Social Stories here.
  2. Sensory Stories:
    sensory_story_cards
    Sensory Stories, published by Therapro, are similar to Social Stories but with the specific approach to teaching children with autism and over-responsive sensory modulation issues to successfully engage in social activities within the home, school, and community. Sensory Stories comprise 30 individual stories about daily activities. These Sensory Stories instruct the child to use calming sensory strategies in order to deal with the unpleasant sensory aspects of that particular situation. When read on a regular basis, Sensory Stories assist the child in developing effective routines to manage the sensory experiences surrounding typical daily activities. The authors have conducted several studies to demonstrate their effectiveness. They can be viewed on the Therapro website.

The Venue Itself

  1. Call ahead and see if the facility has a visual tour for an iPad of the venue. A 360 degree tour to show as much of the rooms, location of bathrooms, etc. would be helpful for knowing the physical layout.
  2. Find out what the venue rules are, how services operates so everyone knows what to expect of the routine
  3. Ask if there could be dedicated time that can be with just families with autism
  4. Would there be a quiet area or small area available for families and individuals who might experience stress during the venue? Here at the Therapro Showroom, we have a sensory area for individuals including a bean bag chair and a basketful of sensory tools. This helps when the parent or caregiver want to look around the showroom. Also, our showroom does not have all products out as that could be overwhelming to individuals. Instead, we ask the parent to make a list of interested products and we go into the warehouse to pick them. Shoppers can sit comfortably at a table and make their decisions as to what they want – no rush.

Helpful Tools During the Venue Visit

  1. Fidgets:
    During stressful times, fidgets help reduce agitation. Therapro’s selection of fidgets have increased through the years as each nervous system finds a fidget helpful and others offensive. Please see our website for numerous fidgets. Our very popular Fidget Kit includes a variety of fidgets so a person can determine which ones they like or dislike. We have many quiet fidgets that can be used unnoticed!
  2. Additional Tools:
    • Sensory Strategy Cards: These are small cards with such strategies as “I can grasp my elbows and squeeze hard”, “I can put a heavy backpack or fanny pack in my lap”, “I can do an elbow-check to make sure no one is too close.” They are visual reminders of the various strategies that children can use. They can be tucked in a shirt or pants pocket for a quick reference to a preferred strategy or put on a belt loop or backpack.
    • Noise-reducing headphones
    • sunglasses

Guest Blogger: Karen Conrad Weihrauch, PhD, OTR/L