Smith, L.E., Greenberg, J.S., Mailick, M.R. (2012). Adults with Autism: Outcomes, Family Effects, and the Multi-Family Group Psychoeducation Model. Current Psychiatry Reports, 14(6):732-738. doi:10.1007/s11920-012-0328-1 (Free full text)
Adapted Abstract
Background and Aims: There are few interventions to support families and autistic youth during the transition to adulthood. This study describes a multi-family group psychoeducation model to help families of autistic children through problems that occur during the transition to adulthood.
Methods and Results: In this 8-week program, 11 families of autistic children aged 15-18 years joined a multi-family meeting once a week for an hour and a half. They received information about different topics related to transition to adulthood. The outcomes measured after completing the program included (1) parental knowledge and empowerment, (2) parent–child relationship quality, (3) child behavior, and (4) parent stress in a pre- and post-intervention interview. Parent-child relationships improved as well as the parent understanding and knowledge of services available.
Conclusion and implication: This model can help support parent-child relationships throughout the transition to adulthood period. Increased knowledge about available services may help parents advocate for access to available services or programs.
Findings
- Improved parental understanding of adolescents’ differences
- Learned about available services.
- Improved quality of parent–child relationship.
- Parents were better able to predict problem behaviors in their adolescents.
- There was no change in child’s behavior or parental stress.
Summary
The curriculum in this multi-family group psychoeducation model was based on previous research in individuals with schizophrenia or mood disorders. The model was adapted based on findings from focus groups of families of autistic individuals. There was specific interest in community activities and connections, learning about solving common problems that autistics and families face during the transition years and training in advocacy. The program Transitioning Together was created to address these needs. The curriculum included transition planning, self-care, informational topics, and legal issues (trust and guardianship). This program has two stages. Initially, the family joins intervention staff and develops goals they want to achieve. Then, the multi-family group sessions occur weekly for eight weeks to talk about topics relevant to autism and activities for problem solving related to each family’s goals. Each session lasts one and half hours. The autistic individuals do not join the multi-family group sessions. Instead, they participate in a group where they play games and take part in learning activities like role playing, skits, cooking, and other hobbies.
The outcomes measured were parental knowledge and empowerment, parent-child relationship quality, child behavior, and parent stress. These outcomes came from a survey given at an exit interview. There were significant improvements in knowledge and relationships between parent and child. Parents also reported feeling as though they could better predict when their child would have a behavior problem then before the intervention.
Real-World Implications
This intervention is feasible for families of autistic youth and may support parent-child relationship which is an important aspect of transition to adulthood. Developing problem solving skills and knowledge of services available may help parents advocate for the needs of their children during the transition period. Parent advocacy networks and other organizations could provide similar education series to support families with the transition to adulthood.
Limitations
- No information was provided on whether the families goals were achieved.
- There were no outcomes directly reported by autistic youth.
Text Slides
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A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z
A
Accessible: When people with disabilities can easily use something. A setting or communication must work as well for people with disabilities as it does for everyone else.
Accessibility: What makes it easy for people with disabilities to obtain, understand or use.
Adolescence: Is from 10 to 19 years old. It is the time when a person is growing to become an adult.
Adolescent: A person who is 10 to 19 years old.
Adult Independence: An adult with disabilities is free to make their own day-to-day choices. For example: how to live, work, and take part in their communities.
Adult resources: Information and supports for adults.
Advocate (to): To speak up and make a case for what you need.
Affirmative Resources: Supports that are respectful and welcome a person the way they are.
Aggressive Behaviors: Words or actions that may hurt someone
Anxiety: Intense feelings of worry and fear.
ASAN: The Autistic Self-Advocacy Network is an organization run for and by autistic people.
Attention Deficit Hyperactivity Disorder (ADHD): A condition where someone:
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finds it hard to pay attention
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may act without thinking
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and needs to move a lot
Augmentative Alternative Communication (AAC): Ways, besides talking, that people show others what they want and need. This includes writing, pointing at pictures, typing, using signs, etc.
B
Behavioral Therapy: Therapy to change unhealthy or harmful ways people act.
Behavior Treatments: (See Behavior Therapy)
Bi-Polar Disorder: A disorder where someone’s mood changes between highs and lows.
Blood Draws: Inserting a needle into a vein to collect a blood sample for testing.
C
Capitated: Paying an amount of money based on how many patients are seen at a doctor’s office.
Caregiver: Someone who helps a person with everyday activities.
Case Management: Someone who helps make sure your services and supports work for you.
Community Programs: Activities or supports provided in your town in the same places as people without disabilities.
Community Resource Guide: A list of support services and resources in a local area.
D
Depression: Feelings of sadness or lack of interest in activities you once found enjoyable. It can change how much you sleep or eat.
Developmental disability services: Supports and programs for persons who are disabled before the age of 18.
Dietician: A healthcare professional who helps people eat healthy.
Dual Disability: Having more than one disability.
E
Executive functioning: How your brain works to focus, make a plan, remember and do more than one thing at the same time.
F
Funding: Money from an organization or government.
G
Gastro-intestinal: The many different parts of your body that food and liquid go through. For example: your mouth, stomach, or anus.
Government Policy-Makers: People in government who make rules and laws.
Guardianship: Guardianship is a legal word. Guardianship is when a court decides that a person cannot make their own decisions. The court then appoints someone else to make decisions for the person.
H
Healthcare professionals: People trained to provide healthcare. This includes doctors, nurses, therapists, etc.
Healthcare providers: People or places that provide healthcare. This includes doctors, nurses or hospitals.
Healthcare transition: When teenagers start making their own healthcare decisions as they become adults. They may change to a new doctor for adults.
Healthcare transition supports: Ways to make healthcare transition easier for teenagers and their parents.
Health Maintenance Organization (HMO). A group of doctors and hospitals who accept a set amount of money for services they provide.
Housing: A place where people live.
I
Insurance: A person pays a set amount of money each month to a company. Then, the company will help the person to pay for health care, like going to the hospital or getting medicine.
J
K
L
Legal Issues: These situations involve laws. A person might need help from a lawyer. In this study, legal issues were guardianship, wills and trusts
M
Mental health professionals: Trained people who help people with their mental health.
Medical Home: In a medical home, a team of medical providers manages your care. They listen to the patient to make sure they get the care they need. It is all about the patient.
Medical Providers: People or places that give medical care. This includes doctors, nurses or hospitals.
Mood Disorders:
N
O
Outcomes: Results.
P
Pap smear: A test where a swab is inserted into the vagina to check for abnormal cells.
Pediatric: Children under the age of 18.
Pediatricians: Doctors for children.
Policy: Rules people follow to know what to do. OR The ideas and beliefs used by a government or group when making decisions.
Post-secondary education: Opportunities to learn after high school. This can include trade programs, college, or any other learning opportunity.
Primary care: The medical office which is the main point of contact for a person’s medical care. It includes basic medical care like annual checkups and shots.
Preventative Healthcare: Healthcare that keeps you healthy, like regular check-ups and routine testing. Healthcare to prevent a condition from getting worse.
Privacy: There is a federal law that says a person decides who can look at and get a copy of your health information.
Q
R
Reactive Healthcare: Getting medical care after you are sick. Not getting healthcare, like a vaccine, to prevent an illness.
Rectal exam: Wearing gloves, doctor puts a finger into the patient’s rectum to feel some internal organs.
Resources- Adult: Information, services and supports just for adults.
S
Safer sex: Ways to prevent pregnancy and avoid sexually transmitted infections.
Screening: A test to find out if you have or are at risk for a health condition
Shared care: When a pediatric and an adult healthcare provider work together to care for a patient
Schizophrenia:
Seizures: A sudden electrical event in the brain
Self-care: Skills used to take care of yourself.
Sensory sensitivities: Being more aware of and sensitive to your environment. For example, more aware of and sensitive to smells, sounds, touch, brightness, quick moving.
Sexual Health and Wellbeing: the physical, emotional, and social aspects of expressing one’s sexuality.
Sexually transmitted infections (STI): Infections that you can get through sexual contact.
Shared Care: Medical care from a group of providers who work together to treat you
Social workers: A specialist who helps you meet your basic physical, mental and emotional health needs. Some do counseling. Some connect a person to services.
Special Educators: People who teach children with learning differences
Specialists: A healthcare provider who treats specific conditions, or works with a certain area of the body.
Supported decision making: Helping a person understand their choices and make their own decisions. Supported decision making is not like guardianship. With guardianship, the guardian makes decisions for the person.
Supporter or Support Person: Someone who may go with the person to appointments.
STI Testing: Medical tests to find out if you have a sexually transmitted infection.
T
Taking Blood Pressures: To measure how strong blood is moving from your heart through your your body
Telehealth or Telemedicine Visits: Meeting with your medical provider on a video call.
Transition Care Coordinator: The person who manages services for a patient moving into adult care.
Transition Services Program: Ways to help a child transition to adult services
Transportation: A way to get from one place to another.
U
V
Vocational programs: Support and training to help a person find and keep a job.
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W
Waiting Room Environment: How a waiting room is set up to make a person feel welcome and comfortable.