Treatment and Care to Individuals with ASD in Community Health Care Centers

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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

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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
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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 userfriendly 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.
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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.
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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