Jackie M. Marquette Ph.D.

Independent Scholar, Educational

Consultant
Specialist in Autism and Life
Transitions
Creator of:
Capability and Independence
Scale (CAIS)
Walking the Path Seminars
Veteran of Adult Transition
7514 Warrenton Hill Ct.
Louisville, KY 40291
502-742-8756 (phone)
502 742-8487 (fax)
jackie@drjackiemarquettegroup.com
www.drjackiemarquette.com

• Uninsured and those covered by Medicaid

and Medicare, CHIP, and private health
insurance.
• Dental
• Substance Abuse
• Wellness/screening preventative
• Cold/Flu other common illnesses
• Minor Injury
• Emergency Care

CHCs - serve 15 million people at 5000 sites.

-CHCs treat whole communities, and within these
neighborhoods are people with diversity and
disability .
-Services as well as nutrition counseling, outreach,
transportation, and other social services to
uninsured
-Culturally sensitive models of health care services
integrated with social and educational services.
-serve migrant workers and the homeless.
-Half are in rural and half are in urban areas.
-Patients serviced by CHCs are poorer and sicker.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

 *A hospital emergency room or
clinical setting can be frightening
for individuals with autism.

*Individuals with autism seek

specialty and emergency healthcare
at CHCs.

*An increased awareness among the

medical staff in CHCs is needed
regarding autism spectrum
disorders (ASD), and the
characteristics and challenges
individuals with autism when they
seek care.

IMPACT-- lack of staff awareness

Refuse to treatment.

Inaccurate diagnosis, thereby receiving

Inaccurate treatment.

IMPACT staff awareness of autism

challenges:

Individual treated with accurate

diagnosis and appropriate treatment.

• Diminish traumatic experiences in

wellness visits and crisis
situations, and
•
• Instead create an atmosphere of
respect, acceptance, and supports
that positively impact the quality
of care for individuals with
autism.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

 • One in 150 eight- year-olds from multiple
areas of the United States had ASD,
•
• Autism begins before the age of three and
lasts throughout a person's life.
•
• CDC estimates up to 560,000 individuals
between the ages of 0 to 21 have ASD (The
Center for Disease Control (CDC)’s
Autism and Developmental Disabilities
Monitoring Network )

PROBLEM:
Entering Health Care Settings Can be most
difficult for the individual with ASD and the
family.

The difficulty for the individual can escalate

with emergency or significant health issue.

SOLUTIONS:
The outcome is dependent upon
staff acknowledging the individual’s
challenges, respect, and meeting needs.

-Parents expressed frustration staff not

responding favorably to individual in wellness
checkups, minor treatments, or emergency
rooms.
-Over a third of the parents of children with
autism parents reported accessing care to
specialty doctors. The most common problems
included getting referrals and finding providers
(Krauss, Gulley, Sciegaj, and Wells 2003).

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

 Medical staff may overlook the challenges of
autism -
can complicate the process in determining an
accurate diagnoses and treatment. --
symptoms from a health problem may go
undetected by healthcare staff -
interfere with the health assessment or possible
medical treatment

Staff may have good intentions. But not

accessing effective approaches that enhance
the individual’s interaction, participation,
and cooperativeness in receiving treatment.

receptive and expressive communication

• social integration
• obsessive compulsive behaviors (especially
in times of stress
• depression
• significant medical issues,
• sensitivity to lights, sounds, touch, odors,
and tastes
• abusive to self
• coping with others’ motivations and

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

Jackie M. Marquette Ph.D. © Autism and Community Health Centers
 NOTES FOR STUDY AND APPLICATION

1) ASD/ CHALLENGE, PROBLEM

-Answering questions about bodily symptoms.
-Interpreting urgent questions can be overwhelming to the patient.
AWARE, ACKNOWLEDGE & ACT
Ask each question separately, provide gestures.
Recognize that the volume and hurriedness of the professional’s voice greatly hinders communication.
-use pictures, diagrams, or a video, or through the caregiver’s explanation.
2) ASD/ CHALLENGE, PROBLEM
In emergency situation via EMS, a stranger, contact the immediate family
AWARE, ACKNOWLEDGE & ACT
-seek various ways to find contacts, a cell phone, list of numbers in wallet, etc.
-individual is conscious with expressive communication delay, provide forms of technology such as a
computer keyboard, an I-phone, or an I-pod, etc., to communicate.
3) ASD CHALLENGE, PROBLEM

May have challenge responding appropriately to non-verbal communication--social cues, gestures, facial
expressions, etc.
AWARE, ACKNOWLEDGE & ACT
-Use single words, short phrases, writing notes, pictures, icons, or a checklist anyway to communicate with
the patient.
4) ASD CHALLENGE, PROBLEM
sensory issues i.e., sensitivity to sound, smells, lights, touch and tastes that limit their participation, tolerance
and adaptation across settings.
AWARE, ACKNOWLEDGE & ACT
May be difficulty navigating the complete process and procedures of health care clinics and hospitals from
beginning to the end, socially and emotionally.
5) ASD CHALLENGE, PROBLEM
Instructions are provided speaking pass the individual… do this, move here. Before he can digest what is
said.
AWARE, ACKNOWLEDGE & ACT
Including the patient in the conversation is important. Offer the patient an option in which he can take part
and choose in his own behalf, for example, choosing to be examined sitting in a chair or lying down. This
also promotes patient responsibility in receiving the treatment/care and respect for individual.
6) ASD CHALLENGE, PROBLEM
-May also have difficulty using different types of transportation. Families may be
dependent upon another family member or a neighbor in order to get the person to the doctor/hospital.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

AWARE, ACKNOWLEDGE & ACT
Transportation to clinic may have been an issue when it appears that a patient may have lingered with the
injury or illness beyond the appropriate time.
Provide the individual or family with information about transportation resources when optional is a valuable
support.

7) ASD CHALLENGE, PROBLEM

-Patient to understand his illness and the treatment as much as possible.

AWARE, ACKNOWLEDGE & ACT

-There are numerous strategies to use in communicating i.e, schedules, checklists, or pictures. One of these
options can enhance the patient and caregiver’s knowledge about a medical procedure, how it will be
administered, the time involved, and the care needed afterwards.

8) ASD CHALLENGE, PROBLEM

-Evaluating when it is time to call or see a doctor at the onset of a problem or during recovery is most
important.
AWARE, ACKNOWLEDGE & ACT
-Encourage individual to take part in his own self- care
-Offer support to recognize improved healing or deteriorating symptoms as a result of the health issue/
treatment.
-Provide steps in which the patient or caregiver can initiate in self-care to aid recovery and healing. A user-
friendly brochure or pictorial guide may help. Recognizing signs of health problems and communicating that
sign to a caregiver or a health professional are part of

9) ASD CHALLENGE, PROBLEM

Challenges in accommodating or participating in settings that are unfamiliar, noisy, and or chaotic are often
difficult for the patient. Sitting in an emergency waiting room can be intense for anyone, but for an individual
with autism the experience of sensory overload and long waiting can lead to emotional exertion, which can
result in a meltdown.

AWARE, ACKNOWLEDGE & ACT

-Simple actions of support can help alleviate the patient’s stress. An unfortunate scenario may be avoided by
offering a quiet safe place to wait, a soft drink/juice, or seeing a patient sooner by moving his name up on a
wait list. Also, it may help if the individual understands a specific amount of time to wait for an examination.

10) ASD CHALLENGE, PROBLEM

Many individuals with autism may have limited connections or even live isolated to because of their
economic situation, a lack of community participation outside the home, unemployment, or limited
schooling/education.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

AWARE, ACKNOWLEDGE & ACT
Recognize that when the patient with autism is being moved around or visited by numerous medical staff--
this can be extremely challenging.
-During interaction use low tone voice with a moderate speaking pace. This can make a positive difference in
the patient’s ability to interpret what is being asked of him as well as help in his overall adaptation to the
situation. Staff who make personal introductions, offer genuine rapport and smiles, and take a few moments
to explain the purpose of their role can be comforting to the individual.

11) ASD CHALLENGE, PROBLEM

With anxiety it often becomes difficult for the individual to effectively
respond to questions asked by the professional.

AWARE, ACKNOWLEDGE & ACT

-Refrain from using the words ‘don’t,’ ‘no,’ ‘it won’t hurt’ especially voiced loudly, as it can appear
threatening to the individual. For example, when the nurse says ‘it won’t hurt,’ the individual may selectively
hear, ‘it hurts.’
-Help the person with ASD understand that the nurse is there to help him, and the patient has a job to help the
nurse give the treatment. This can promote his willingness and acceptance.

12) ASD CHALLENGE, PROBLEM

Approach learning a new skill or task. Change can be difficult. For example, using technical equipment to
assess for blood sugar levels after being diagnosed with diabetes.

AWARE, ACKNOWLEDGE & ACT

Some examples of support include: a video using a checklist with words or photos; teaching in steps or
chunks; offering daily practice with a professional/advocate or a teacher/caregiver for continued support in
learning the skill at home.

13) ASD CHALLENGE, PROBLEM

Responding cooperatively to medical staff within a hospital setting may be challenging to some individuals
with autism.

AWARE, ACKNOWLEDGE & ACT

-With supports and clear expectations-- it is possible. When redirecting a person’s behavior, specifically
request the particular steps he/she can do to make the examination or medical treatment successful. Two
examples of supports, 1) swallowing bad tasting medication with a soft drink or juice, or 2) holding a squeeze
ball or flipping through a magazine with pleasant pictures while blood is drawn.

14) ASD CHALLENGE, PROBLEM

Following an instruction given by a nurse when the patient has no prior experience may seem confusing,
especially when the expectation is to do it independently, i.e. giving a urine specimen. Confusion may
intensify in an unfamiliar tumultuous hospital setting.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

AWARE, ACKNOWLEDGE & ACT
The individual may need clear instructions, finding the restroom, steps in the complete process from entering
the bathroom to going back to the examination room. If the individual is more severely involved, a caregiver
may provide more support.

15) ASD CHALLENGE, PROBLEM

-Can be upsetting for individual to not understand when a procedure is over. Endurance of a procedure is the
challenge. Understanding when an assessment or a medical procedure is completed can be reassuring to the
patient.

AWARE, ACKNOWLEDGE & ACT

Offer a process of steps from beginning to end so the patient understands when treatment is complete.
Patient anxiety can be diminished when understanding how long to wait or what is involved in the full
examination/visit.

16) ASD CHALLENGE, PROBLEM

People with autism often have a significant challenge interpreting emotions, both their own and others.
Understanding one’s emotions in the middle of an illness or an injury may aggravate his or her ability even
more.

AWARE, ACKNOWLEDGE & ACT

-Validate and name the fearful emotions the individual is experiencing within the setting, with the staff, or
about the treatment can be tremendously helpful.
-Offering empathy and sensitivity during treatment can counterbalance panic, while assuring to the
individual that he is being well cared for by good nurses and doctors. -Medical staff provide tender
responsiveness toward the patient with ASD can be sensed and felt.

17) ASD CHALLENGE, PROBLEM

Feels or expresses emotion for personal accomplishment or loss.

AWARE, ACKNOWLEDGE & ACT

Accomplishment:
When a patient has managed a very difficult wait or treatment, acknowledge his effort and willingness.
Verbally commend his accomplishment and how difficult it was to make it through the assessment or
treatment and successfully overcoming the challenging event.

ASD CHALLENGE, PROBLEM

Loss:
Recognize that people with autism may not react typically to an emotional loss.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers

ASD CHALLENGE, PROBLEM
Loss:
Recognize that people with autism may not react typically to an emotional loss.
For example, one teen laughed incessantly during a hospital visitation with a dying
grandmother. His response appeared inappropriate, but was his way of responding to the trauma. The patient
may have experienced a loss and there is a need for staff awareness about the diverse ways people with autism
approach loss. Recognize certain situations as emotional loss and provide comfort.

Some reasons for distress in individual with ASD:

When the patient exhibits severe anxiety, the reasons can be numerous.
a)It may be a strong disconnect of a supportive family member who was not allowed in the surgical room
where the medical treatment was given.
b) The patient may be in significant pain. Yet may not appear to be in any pain, although he or she had a severe
injury i.e. a broken finger. The individual’s response may not reflect the extreme pain he is actually feeling.
Recognize that all individuals with autism do have feelings but may not exhibit having pain. They may not
show emotions nor appropriate responses to traumatic events. Provide understanding, comfort, and supports.

18) ASD CHALLENGE, PROBLEM

-Individuals with autism may display obsessive behavior and it may be heightened
during times of stress.

AWARE, ACKNOWLEDGE & ACT

For example, during an examination if the individual becomes obsessed with an object, suggest that you
exchange that item for another. Other suggestions for support may include moving him to another examination
room, offering a family member to be with him, or provide a calming technique such as listening to soothing
music.

Using Self Talk

Make a suggestion to the individual specific ways he can guide himself into relaxation. Encourage him
to take part in his own self-care by repeating positive phrases. “I am being cared for by good doctors and
nurses. I am calm. I can handle the nurse giving me a shot or drawing blood from my arm. I am waiting
patiently. I can ask for what I need. I can ask for a cool drink of water. My needs are being met by the kind
people in the clinic.” Professional staff may suggest deep-breathing activities, offer soothing calm
music, or an adult stress ball to squeeze to release tension.

Jackie M. Marquette Ph.D. © Autism and Community Health Centers