Support Groups
State Support Groups
ANSWER Asperger’s Minnesota Network mission is to create a network that advocates for community awareness, furthering research, better education and support of individuals and families living with Asperger’s Syndrome. We are an informational channel where ideas and resources can be shared utilizing public relations, the web and parent networking. We support training for educators in the areas of Social Skills, Daily Living Skills, Relaxation and Transitional Skills. We facilitate support groups for families and acquire funding to support research. We offer a holistic approach from diagnosis to independent living by making resources available and advocating for affordable intervention and support programs. ANSWER geographically serves the Northwest suburbs of Minneapolis, MN. Our support groups & workshops bring in families from all over the Twin Cities and some from Greater Minnesota.
AuSM provides a variety of support groups to meet the needs of parents, children, family members, individuals, couples and more. Support groups offer those affected by autism the opportunity to share problems, solutions, joy, and sorrows with one another. Most groups meet monthly, and advance registration is required.
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. They connect a network of family organizations across the United States that provide support to families of CYSHCN. CONNECTED is a free state-wide parent-to-parent peer support program provided by Family Voices of Minnesota for families whose children have chronic or complex special healthcare needs or disabilities. GET CONNECTED with resources, information and other parents who understand what you are going through. All staff of Family Voices of MN are also parents of a child with a disability or chronic health condition. We are here to listen and connect you with resources and other parents.
Parent Teacher Home Visits (PTHV) is a voluntary meeting between two equal partners with common goals, in a setting away from the intuitional power of the school to help in collaboration.
Regional Support Group
Founded in 2014 by group of Somali American immigrant families with autistic children, the mission of Somali Parents Autism Network (SPAN) is to educate and inform Somali families of children with autism spectrum disorders (ASD) in Minnesota via outreach, education, and collaboration, for the purpose of connecting them with resources and services with the end goal of early intervention, and caregiver empowerment.
SPAN provides:
RT Autism Awareness Foundation Inc. in Rochester
Eden Prairie Autism Awareness Club the EP Blue Birds
Autism Allies in Wright County
Designed by autistic adults for autistic youth, the Autism Mentorship Program (AMP) pairs autistic high school students from Bloomington Public Schools (BPS) with autistic adults in one-to-one mentoring relationships designed to provide support for the present and hope for the future. If you’re interested in having your BPS student join AMP or would like to apply to become a mentor, e-mail AMP.
Children’s Mental Health and Family Services Collaborative organizations in Minnesota help address the needs of children and youth faced with complex healthcare needs, maximize results and resources by enhancing coordination and reducing duplication among systems and involve communities, particularly families, in system redesign and implementation so their needs are effectively met. There are different collaborative organizations located throughout the state (PDF). Many of these groups offer support groups and trainings to families.
For example, the Parent Catalyst Leadership Group is a part of the Hennepin County Children’s Mental Health Collaborative and their mission is to empower Hennepin County families to become valued advocates and decision-makers at all levels of the children’s mental health system through education, outreach, and support. Search the Collaborative Directory (PDF)to find a collaborative near you.
National Support Groups
Parent Teacher Home Visits (PTHV) is a voluntary meeting between two equal partners with common goals, in a setting away from the intuitional power of the school to help in collaboration.
In Psychology Today, there is a Minnesota support group section for a list of groups throughout Minnesota.
Greif and Loss
Grief and loss can be a challenge for anyone to process. Discussing illness, loss or death can be difficult. People with autism spectrum disorder (ASD) may struggle to understand or express their emotions around grief. A support network can be helpful when processing grief. Working with a mental health professional can be helpful.
The National Autistic Society has resources and information on supporting children and adults with ASD cope with death and bereavement.
Stages Learning provides some ideas about how to help kids with ASD understand and cope with death and bereavement.
Crisis Services: Call **CRISIS (274747) from a mobile phone to talk to your county mental health crisis team. If you are calling from a land line, find a phone number in these directories:
Adult mental health crisis response phone numbers
Children's mental health crisis response phone numbers
Peer Support Connection Warmlines is a peer-to-peer telephone support that’s safe and supportive and open 5 p.m. to 9 a.m. Call or text: 1-844-739-6369
Sex Education and Wellness
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Relationships form the backbone of interdependence. A relationship is about connection between two individuals. That connection is what allows us to offer support to each other and, in turn, depend on each other. Relationships allow us to trust others when we need support. Without trust and communication, we would not be able to offer each other resources and skills. Without relationships, we cannot form interdependence.
Autism Society of MN has resources designed to help autistic individuals and their support systems recognize healthy relationships of all kinds.
Mad Hatter Wellness envisions a world that provides equitable health and wellness education for all people. They specialize in trainings and curriculum on sexual health and wellness.
Families, providers and self-advocates can attend a workshop or request a training on sexuality and healthy relationships from Autism Society of MN.
The Organization for autism research has resources on Sex Ed for Self-Advocates. This guide is a sexuality and sex education resource written specifically for autistic people aged 15 and up. In each of the nine sections of the guide, self-advocates will be able to read articles and watch brief videos before testing their knowledge about a given topic and practicing new skills.
It’s important for the person and family to work with their healthcare team on sex education and sexual health. Mental and behavioral health professionals may be able to increase understanding and awareness of healthy boundaries and self-care skills related to hygiene. Educators must be sure to adapt resources and sexual education curriculum to the person’s learning style and strengths (e.g., visuals to explain concepts). Talk with the primary healthcare provider about contraceptives and sexually transmitted diseases and other topics within their scope of practice.
Additional resources on sex education and autism:
How to Start a Support Group
What is a support group?
A support group is a safe space for people to share challenges and celebrate successes. It is also an opportunity for people who have been through similar situations to come together and share tips, advice and offer encouragement. Support groups build community and help to decrease stress. There may be support groups near you that you can join or even online. If there isn’t a support group in your area or that meets your needs, you can start your own. Anyone can start a support group, you don’t have to have any special training or expertise.
How do I get started?
- Define the purpose of the group and who your audience is.
- Designate a facilitator or leader. Identify a back up or co-leader in case you aren’t able to attend. The leader will be in charge of keeping the group on topic, planning the meetings and enforcing the group rules.
- Tip: If you have a hard time finding someone to facilitate every meeting, you can also take turns and designate a different facilitator for each meeting.
- Identify a location (e.g., online, community center, empty classroom, church basement, etc.)
- Determine a time, date and duration to meet on a regular basis
- Note: If you are meeting with parents at night, you may want to consider offering child care or preparing activities for older kids to engage in while the adults meet in another area.
- Prepare questions to start the discussion and encourage conversation. Play a short video or read a short story to ground everyone in the topic of conversation. You could also invite guest speakers for a portion of the time if people are interested in hearing about resources or gathering information on certain topics.
- Advertise:
- Invite co-workers, friends, family
- Word of mouth
- Post flyers in places with families and young children
- Advertise on radio, newspapers, etc.
- Share on social media
- Create a Facebook page with events for different topics or types of support groups
- Share on pages that are related to your cause; i.e., advocacy organizations, county or tribal agencies, providers, child care, school district, etc.
How to host the support group?
- Welcome everyone and ask them to give a brief introduction. They will likely feel a little intimidated at first, so try to make them feel welcome and let them share more as they start to feel comfortable.
- Tip: if people are quiet, you may want to start with an icebreaker to facilitate conversation and put people at ease before bringing up any specific topics.
- Tip: It can also be nice to offer some light refreshments at meetings to encourage people to come early or stay late to gather and talk informally with other members. You may even be able to get local businesses to donate snacks or coffee or give you a discount.
- Set the ground rules:
- Confidentiality is a must. Remind everyone that anything they share at the meeting will stay with the group.
- Listen and don’t interrupt other members. The facilitator will need to feel comfortable cutting people off if they aren’t allowing enough time for others to share.
- Pose a question and then encourage members to go round robin so that everyone has a chance to share if they would like.
- Never force someone to participate. You can encourage and ask what might help them to open up, but everyone has their own level of comfortability and needs to go at their own pace.
- Encourage others to share from their own lived experiences and give insight to what they learned, but try to avoid giving advice. Each person’s situation is unique and although suggestions or tips might be helpful, everyone will have to decide what works best for them or their child.
- Support groups are a safe space for venting frustrations, and can potentially become dominated by one or two voices. Work together to ensure that groups remain a safe place where everyone is comfortable sharing and encourage equal participation through round robin, icebreakers, designated talking pieces and other strategies.
- Ask for feedback. Send out a survey or ask members to share their constructive feedback at the end of the meeting. This will allow you to adjust the next meeting and ensure that it is helpful to everyone. Ask participants for ideas, topics and suggestions for the next group.
- If you are meeting in person, you may need to clean up the space, move chairs back into place or clean up at the end of each meeting.
- Send out reminder of the next meeting.
Supports for Siblings
The Sibling Support Project is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs. Initiatives include Sibshops, online communities for brothers and sisters, publications and workshops and trainings.
The mission of the national Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
Special Needs Siblings is a committed to raising awareness, support and resources for the siblings of disabled individuals by connecting communities globally.
Supporting and Empowering Siblings Focus on the Future Podcast. Learn about the role that siblings play in future planning. Emily Holl of the Sibling Support Project discusses how siblings can be empowered to be a part of planning for the future. Siblings know each other in ways that parents, teachers, doctors, therapists, and others do not. Their ideas and input are a powerful piece of making plans for the future alongside the sibling with a disability. In this episode, learn what support siblings crave when they think about stepping into a caregiver role over time.
The Institute on Community Integration at the University of Minnesota dedicated its entire Spring 2020 issue of their international journal, Impact, to siblings. Check out the articles on Supporting School-Age Siblings Worldwide: Sibshops and Young Siblings of Individuals with Intellectual/Developmental Disabilities: Common Experiences, or explore the entire issue for stories on sibling perspectives, research and supports across the lifespan.
Sibling Resource Library, hosted by WisconSibs, includes free resources for siblings of people with autism, as well as recommended reading.
Source: Minnesota Autism Resource Portal