Thursday, April 18, 2013

The Changing Face of Autism

Deanna Macioce, MS, OTR/L

1 in 250…Those were the statistics when I started life as an occupational therapist.  Autism was something that we touched upon during school, but not much different than Cerebral Palsy or Down Syndrome.  And now the numbers are reported at 1 in 50. I have been a pediatric OT treating in a variety of areas, homes, schools, clinic based, and in the community for over 10 years.  However, the face of Autism has changed and intensified during these years.  And based on these numbers, it should not be a surprise that Autism has actually shaped and developed me as a therapist and a person; just as it has our schools, daycares, and so many community programs.

I still remember the first child on my caseload that had the Autism diagnosis. As a new graduate, there was so much that intrigued me and I wanted to learn everything that I could about the child and the diagnosis.  I was thirsting for the knowledge and ready to eat it up.  And although there were many resources, the information often was still vague, and there was not the mass quantity that there is available today.   Websites and organizations such as Autism Speaks, were not yet developed, as well as the knowledge and technology were definitely not where they are today.

In addition, I often reflect on the first parents I worked with trying to figure out why their child seemed “different”.  For one family, it was a child at almost 3 years old that showed no interest in opening up any present at Christmas, or knew the exact route Mom needed to take home from daycare; a daycare that never worked with a child on the spectrum.  For another family, it was a daughter who had a toy room filled with toys, but never interacted to engage in play with any of them.  For me, these were difficult situations, but growing ones.  A major challenge then was that these parents never heard of the word Autism.  They had no clue what characteristics would put their child on the spectrum.  Autism then was not known like it was today.  Therefore, it made the process a bit more difficult and definitely longer.  Today, it appears that we almost all know someone who loves a child with Autism, as well as medical staff, teachers, and daycare workers are all being educated and informed in order to better understand and care for our children.

Today, with increased knowledge and learning about Autism, the signs and symptoms have changed and have become more specific.  The Autism Speaks website ( list the “red flags” for the possibility of being at risk:

•    No big smiles or other warm, joyful expressions by six months or thereafter
•    No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
•    No babbling by 12 months
•    No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
•    No words by 16 months
•    No meaningful, two-word phrases (not including imitating or repeating) by 24 months
•    Any loss of speech, babbling or social skills at any age

It also offers parents and caregivers the opportunity to complete a screening, the Modified Checklist for Autism in Toddlers (M-Chat), which is a great way for parents to take a quick look at some developmental skills that should be occurring, and indicate whether or not their child is meeting them.  Because, as parents, sometimes we are not fully aware of what is expected of a child at a certain developmental stage.

As an OT, my theoretic knowledge to treat these children is rooted in sensory integration or Sensory Processing Disorder (SPD). The SPD and STAR Center website states, “more than 75% of children with autistic spectrum disorders (ASD) have significant symptoms of SPD. However, the reverse is not true. Most children with SPD do not have an autistic spectrum disorder” (  They also note that by “addressing sensory features (it) is foundational to improving the social and communication problems of children with Autism.”   This is why OTs, with many others help make of the team of people ideal to work with these children.

I like to look at who the child is, and not the “label” he or she carries when developing a treatment plan.  So, therefore it is important to look at where the family is and what their needs are at that point in time at home, in the school, and with whatever community interaction the child has. In my years of treating, I have addressed the concerns and developmental needs of toddlers and young children, however spanning over 10 years much of my focus has now been on school-aged children up through young adults, changing the needs and focus for both these children and the families.

For me, Autism has been part of my “job”, but it has also been a journey.  For the past 5 years, I can honestly say that Autism has shown itself more than 90% of the time on my caseload.  And although I am not a parent of a child on the spectrum, I am a person who has been touched by this diagnosis.  I have walked this journey with many parents and caregivers, and am so thankful for all that they taught me.  As an individual and therapist, I have learned to listen and support these families.  Truly understanding what their concerns are and what they need to function as a family. I know I am only a “stop” on their journey and there are many more that they will make, but while they are “visiting” me, I hope to use my knowledge, skills, and therapeutic use of self to make a difference.