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Extension > Youth Development Insight > Autism: The fastest growing developmental disability impacts youth development

Wednesday, August 19, 2015

Autism: The fastest growing developmental disability impacts youth development

By Darcy Cole

If you have worked in youth development for long, you probably have encountered at least one youth who seems “unique”. You might not know exactly why he or she is different, but you know for some reason she is. That something may be called autism.

As a parent to two of these kids, I have first-hand experience every day with the challenges and joys that autism can bring.

According to The Autism Society, “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a ‘spectrum condition’ that affects individuals differently and to varying degrees.” Some of the behaviors associated with autism include:
  • Delayed speech or absence of speech
  • Difficulty making eye contact or holding a conversation
  • Difficulty with executive functioning
  • Narrow, intense interests
  • Poor motor skills
  • Sensory sensitivities
  • Repetitive behaviors
It's important to note that individuals with autism may exhibit all or some of these behaviors, in addition to many others.

In March 2014, the Centers for Disease Control and Prevention published its Autism and Developmental Disabilities Network Autism Prevalence report. It concluded that the prevalence of autism had now risen to one in every 68 U.S. births. As indicated in the chart above, this is nearly double the 2004 rate. This increased prevalence raises the need for youth development workers to be prepared to work with special needs youth.

Autism Speaks has developed the Leading the Way: Autism-Friendly Youth Organization Guide to better prepare youth-serving organizations to serve families with autism. This guide provides background information on autism, successful program practices, and identifies organizations that are developing programs and practices to attract and accommodate youth with disabilities. Here's a partial list of autism-friendly youth organizations:
In 2012, Autism Speaks conducted a national survey of youth organizations. Results identified the barriers that youth with autism face to full program participation, and give a better understanding of what would help organizations successfully include young people with autism. The most commonly identified unmet needs include:
  • Staff education on autism and training on effective interventions
  • Programs offering adaptive services for people with autism
  • Affordable programs
  • Opportunities for socialization with neuro-typical youth 
Overall, survey respondents stressed the need for youth development professional training in behavior management, tips for working with people with autism, communication strategies, and activity safety risks like wandering, hypothermia, drowning, etc.

How are we, as youth development professionals, preparing to serve an increasing number of young people with autism in our programs? What experiences have you had working with youth who have autism?  What successful or unsuccessful strategies have you found?  What resources do you feel you need in order to better serve these young people?

-- Darcy Cole, 4-H program coordinator

You are welcome to comment on this blog post. We encourage civil discourse, including spirited disagreement. We will delete comments that contain profanity, pornography or hate speech--any remarks that attack or demean people because of their sex, race, ethnic group, etc.--as well as spam.

4 comments:

  1. Darcy,
    Thank you for the very informative post! I appreciate you capturing so much in a short, easily readable and shareable post! Could you also point people to the short video which you produced in the Diversity & Inclusion cohort that speaks to this topic? I think others would benefit from viewing that story/film! Thanks.

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  2. Thanks Anne for the comment! I appreciate the feedback. The video you mention is available at https://www.youtube.com/watch?v=FHlb_KoQ_JM. My Youth Development Insight blog post from earlier this year, focused on the lessons to be learned from the video in accommodating special needs youth. It is available for reading at http://blog-youth-development-insight.extension.umn.edu/2015/02/are-we-doing-enough-for-special-needs.html.

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  3. I'm interested in learning more about the barriers and my mind is also pondering a question. Why are some groups successful and what can we learn from them? When you were reviewing the data were there any characteristics of groups(other than the lack of these identified barriers) that successfully engage and support youth with autism in their programs?

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    Replies
    1. Great questions! I think that the groups who are most successful are likely those who take a little extra time an effort to truly accommodate the needs of youth with autism. Pages 44-51 of the guide provides ideas for engaging and supporting youth with autism. Here are some of them that I think are most applicable to most youth development situations:
      "Strategies for Success
      • Be calm and positive.
      • Model appropriate behavior for the youth with autism, as well as the other program participants, by greeting him and engaging in a respectful way.
      • Situate the youth with autism for optimal attention to the group and learning activities.
      • Be aware of sensory issues that may affect him.
      • Provide written rules or pictures of expectations of behavior. People with autism often follow rules better when they know why a rule exists.
      • Use descriptive praise to build desired behavior. For example, “I like the way you put your trash in the trash can.”
      • Give positive directions, minimizing the use of don’t and stop. By saying “Please sit in your seat” instead of “Don’t stand up” you are clearly describing your expectations.
      • It may be necessary to wait for a response to a question, use an alternative communication device or a communication strategy such as picture exchange.
      • Collaborate with the participant’s parents or aide to modify your curriculum or materials.
      • Make sure that activities such as field trips, presentations, talent shows, plays or anything out of the usual is discussed ahead of time. Think about ways to include them and discuss and plan with their family and support team.
      • Be aware of the vulnerability of youth with autism and the propensity for them to be victims of bullying behaviors, especially in areas with little supervision."

      The physical environment is also very important when working with youth with autism. Here are some tips:
      "The Physical Environment
      1. Reduce Distractions
      Many people with autism find it difficult to filter out background noise and visual information. A space without too many distractions will decrease sensory overload and help the person with autism focus his attention on the task at hand instead of other stimuli.
      • Eliminate non-essential visual materials such as posters and signage.
      • Block out distractions with window shades and screens.
      • Declutter the room as much as possible.
      • Avoid flickering and humming from fluorescent lighting.
      • Reduce the intensity of lighting by using fewer bulbs, natural light or lamps from home.
      • Block out mechanical noises from heaters or fans as much as possible.
      • Do not use room deodorizers or fragrances.

      2. Personal vs. Public Space
      Because youth with autism have specific social challenges, providing some personal space is more of a priority than for their typical peers.
      • Space should allow for social interaction, but also provide a space where they can be separated from the group to get their bearings.
      • Create a soothing area where the person with autism can escape when they become overwhelmed
      • or where they can watch the activities at a distance until they are comfortable enough to participate"

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