By Julie Cullen, Managing Editor, American Nurse Today
I recently spoke with Donna Swanson, MSN, CS, APRN, executive director and co-founder of the FOCUS Center for Autism in Canton, CT. Donna, who has over 30 years of nursing experience, specializes in the assessment and treatment of children and young adults with autism spectrum disorder (ASD). She shared some insights and offered advice for nurses caring for patients with ASD.
Autism is a broad term. Can you provide a definition or overview?
The clinical term for autism is autism spectrum disorder or ASD. It’s is a bio-neurological developmental disorder that generally appears before the age of 3. It impacts the normal development of the brain in the areas of social interaction, communication skills, and cog-
nitive function. Depending on where an individual may fall on the spectrum, they may also have comorbid medical conditions such as epilepsy, feeding and sleep problems, and sensory processing problems. My simple definition for ASD is “creatively wired and socially challenged,” because no two people with ASD are alike and this is what makes them so hard for professionals to assess and treat.
What challenges might nurses encounter when caring for a patient with ASD? Are the challenges different between children and adults?
ASD is very challenging in and of itself, regardless of the age or the setting. The most important first step is building a relationship and offering a safe comfort zone when you first encounter an individual with ASD. I’m very aware of personal space and my approach is thoughtful. Kindness, empathy, and just saying “I’m here to help” are good places to start. Trying to find something in common to begin engagement is also helpful. Your approach should be slow, not rushed or frenetic and talking should be in a simple and down to earth manner. Too many questions, directions, and information all at once can be overwhelming and increase anxiety to a level of flight or fight. Offer encouragement and ask patients what they’re most concerned about today. Ask if there’s anything you should know about them or their worries that will help you do your best for them today. Proceed cautiously; the person with ASD can pick up on anxiety and may intuit your level of comfort in these situations Make sure to ask what’s most helpful to make the visit a success.
What tips/advice can you offer to nurses to ensure patients (adults and children) feel safe and secure during a healthcare encounter?
Anxiety is often a big factor in any encounter and being aware of the many faces of anxiety is crucial. Sensory issues are also a factor, so make sure the environment is as comfortable and as predictable as possible so patients with ASD know what to expect. Lights, noise, people coming in and out of the room are triggers for increased anxiety, so make other staff aware of this individual’s needs. Always introduce yourself and others every time you meet. Also ask about food preferences and when they last ate; anxiety increases metabolism and irritability, and food offers love and comfort. Keep some sensory tools handy like squeeze balls, silly putty, fidgets, and drawing and coloring materials.
What kind of training/education would you recommend to nurses so that they’re prepared to care for patients with ASD?
Understand that autism is a spectrum disorder and affects each individual differently. Individuals can have minimal symptoms through moderate to severe limitations in functioning, understanding, use of language, and ability to read and process social cues and situations. Read what you can about ASD, not only from professional journals but from the literature—books and magazine articles written by individuals with ASD or families of children/teens/adults with ASD. This will help you understanding the range and spectrum of functioning. If possible, take time to visit an ASD clinic, center, or school to make observations and have some personal interactions with individuals on the autism spectrum.
If a nurse has an encounter with a patient (child or adult) who hasn’t been diagnosed with ASD but whom the nurse suspects might fall on the spectrum, what should he or she do? What kind of referrals can the nurse make? What kinds of questions should the nurse ask?
This is a delicate area certainly…it can engender fear, anger, and denial in some parents to bring up the subject of a concern about their child’s development. A good start may be to ask the parent if he or she has ever had concerns about the child’s medical well-being or developmental or social functioning. Ask how the child is functioning in daycare, school, or playgroups. What do they hear from adults who interact with the child?
Gently share with the parent what you notice that makes you wonder if further evaluation is warranted. For example:
- I notice he’s covering his ears when I speak in a normal volume; am I sitting too close for his comfort level?
- He seems very anxious and is looking around a lot…Is he especially sensitive to noise?
- Do you think something in the environment upsets him?
If the child is school age, some questions can be gently directly to him or her.
These questions may prompt a discussion between you and the parent, which can lead to a recommendation to have further concerns brought to a provider. Become familiar with the local birth to three programs, developmental clinics/children’s hospitals, child psychologists/psychiatrists who can be sources of information and further referral. Ask the family if they’d like to sign consent for you or your clinic/office/hospital to share your observations and concerns with these resources to help facilitate the referral process.
If you’re talking to an adult, gently share your concerns and observations and ask if the individual ever noticed the same about himself or herself. For example, you could ask:
- You seem to have some difficulty looking directly at me. Is that always hard for you?
- What have you noticed helps or makes the situation worse for you?
- What else about being with or communicating with others is difficult? Have you ever spoken to your provider about these concerns?
Let the patient know that you can provide resources and ask if you can share information with the patient’s provider.
What else should know about caring for patients with ASD?
See the person with ASD as an individual first. Each is unique and can teach us something new about them (and often ourselves) with each encounter.
Many professionals don’t feel they’re helping someone with ASD if they don’t see results or participation. My strong belief is that anytime you can have a positive and caring encounter with someone with ASD you’ve offered help and added to his or her “relationship bank.” Try to manage your own anxieties and expectations as individuals on the spectrum are very intuitive, whether they’re verbal or nonverbal. Knowing that you care and want to help is priceless.
Julie Cullen, managing editor of American Nurse Today and a curator of online content for the American Nurse Today website, is most definitely not a nurse, but she admires what all of you do everyday. In her Off the Charts blog she shares some of her experiences as a patient and family member of patients, thoughts and ideas that occur to her during her work editing nursing content, and information she thinks you might find interesting. Julie welcomes your feedback. You can submit a comment on the website or email her at firstname.lastname@example.org.