16 things you should know if you love someone with autism

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Spurwink logo: Blue for Autism Awareness month

Guest post by Eric Campbell, MS, BCBA, Senior Program Director for Education at Spurwink.

Having a family member with Autism Spectrum Disorder (ASD) can create unanticipated challenges in many facets of life. Once a rare disorder, the most recent Centers for Disease Control and Prevention (CDC) report indicates that one in every 68 children in the United States is diagnosed with ASD.

In Maine, the rise in ASD diagnoses has resulted in a larger number of people being affected, either directly or indirectly. On average, Spurwink — a behavioral health and educational service provider for children, adults, and families across Maine — has nearly 3500 open cases on a given day. Approximately one in 10 of these youth and adults have ASD.  Virtually every Spurwink program and service supports youth and adults and families affected by ASD.

Autism is a serious neurodevelopmental disorder. It has symptoms ranging from mild to severe, but certainly introduces changes to family life regardless of severity.

Children with ASD can have challenges with motor skills, communication, social interaction, and sensory stimulation. Much of what we know about relationships and navigating through life is different for an individual with ASD.  But there are interventions and many other families piloting through similar waters. Additionally, individuals with ASD are themselves rich resources with much to offer.

In the spirit of learning, helping, and supporting, it seems important to consider what you should know when supporting an individual with ASD. I’ve spent 16 plus years in the field and worked with hundreds of children and adults with ASD and their families and caregivers.

16 things you should know

When supporting an individual with ASD, I recommend using some of the strategies outlined below to help guide families and caregivers:

1) Set up the environment for success. Think about everything that is going on around you and how that may be interpreted by an individual with ASD. Consider things such as lights, noises, movement, temperature, and physical layout. Individuals with ASD may be sensitive to most of the stimuli that we have learned to filter out.

2) Exposure to various experiences and activities and early intervention can be greatly beneficial. However, take care not to put a round peg in a square hole. You may need to make some adaptations in order to meet an individual with ASD where he/she is at.

3) Expect progress to be slow. At times, you might be like the frog in the old tale taking “two steps forward and one step back.”  Hang on. Perseverance does pay off!

4) Accept support from wherever you can find it. You may find many professionals and caregivers in your everyday life and sometimes feel like you have no privacy or personal life. Remember, these people are taking the journey with you.

5) Know your loved one’s specific symptoms or presentation. Interventions and strategies need to be geared toward specific deficit areas. Things to look at include social skills, emotional regulation skills, daily living skills, communication skills, cognitive skills and gross and fine motor skills.

6) Individuals with ASD are often visual learners. Present information with a visual component whenever possible to help reinforce understanding and to help compensate for receptive language delays.

7) Break tasks down into smaller, more manageable steps. This will help your loved one feel more organized and less overwhelmed, and will allow you to focus one piece at a time.

8) Consider alternatives to traditional communication. Sometimes a picture, gesture, or object may in fact “say a thousand words.” Think too of how you are speaking (tone, choice of words/number of words, nonverbal messages, facial expressions, etc.) and how that may be processed by an individual with ASD.

9) Use the individual’s strengths and interests. Sometimes being stuck on an interest or having a limited area of interest might be the motivator you need to engage in a challenging activity or to learn a new skill. For one of my students, we were able to use his knowledge of US coins and banknotes to structure the process of learning US History.

10) Watch for physical, verbal and behavioral cues from your family member as a means of communicating his/her needs, wants, or protests.  Be ready to adapt your expectations and the environment when needed.

11) Incorporate sensory strategies/supports and movement into activities. Individuals with ASD may need consistent levels of sensory input and movement to help keep their minds focused in order to attend to and engage in tasks. Some individuals with ASD may seek out sensory input in unsafe ways, so being proactive and providing sensory supports can help to maintain a safe environment for everyone.

12) Try to be as structured, consistent and predictable as possible with expectations, language and routines. Keeping things the same over time provides much-needed repetition for skill development and promotes emotional regulation.

13) Plan, plan, plan. Try and stay two steps ahead. The more proactive you can be and the more thought and planning you can put in before starting the activity, the better your chances of a successful outcome.

14) Practice, practice, practice. Individuals with ASD can sometimes have difficulty with motor planning and generalizing skills across environments. The more often you can practice in general and incorporate different places, individuals and natural cues, the more likely this new skill will be repeated over time and in different environments.

15) Expect that things may move slowly. Perseverance does pay off!

16) Finally, be willing be to put yourself in that individual’s shoes whenever possible. Be open to understanding that minor changes in a routine may cause great disruption and upset to your loved one with ASD. Also, consider what might be the function or need behind a behavior. If we can understand that, we stand a better chance of helping that individual develop a more effective strategy to get his/her needs met.

Guest post by Eric Campbell, MS, BCBA, Senior Program Director for Education at Spurwink.

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. Now she writes the award-winning blog Catching Health with Diane Atwood.