Ross, Jane

Wheeler, Marci J.

English

IUScholarWorks

 
 
Finding or Starting a Support Group 
Contributed by Marci Wheeler, M.S.W. & Jane Ross, M.S.W. Candidate 
When you receive the news that your child has an autism spectrum disorder, you may experience a range of 
feelings including confusion, fear, and loneliness. Even with spousal and/or family support, it may seem that no 
one understands what you are going through or that you have nowhere to turn for answers. You may begin to 
search for information on autism spectrum disorders. You may ask, “Where are the other parents like me and how 
do I find them?” It is hoped that this article will assist you in that quest. 
Across the state of Indiana and the nation, parents, family members, and friends have come together to organize 
on behalf of persons who have been diagnosed with an autism spectrum disorder. Some groups are affiliated with 
other agencies; some are not. The groups are as diverse as are the needs of individuals with autism. If you are 
considering starting or joining a support group, please read on as we attempt to answer questions you might have. 
This article walks you through the process of joining or starting a support group. 
Finding an Existing Group
Your first step is to research what might currently be available to you. The Indiana Resource Center for Autism has 
available a listing of parent support groups in the state of Indiana. Of the groups listed, most are focused on 
autism spectrum disorders. Those groups that have a broader focus on all disabilities still have a large portion of 
families who have children with an autism spectrum disorder. You may find this listing at 
http://www.iidc.indiana.edu/index.php?pageId=546 or you may contact IRCA at 1-812-855-6508 or toll free at 1-
800-825-4733 and request a copy be mailed to you. Every effort is made to keep the information, in this listing, 
current. 
You will notice on the listing that some groups indicate that they are members of the Autism Society of America, or 
Autism Society of America, Indiana Chapter. Information about membership with ASI can be found at 
http://www.inautism.org. It is not necessary to be a member of the Autism Society of America in order to have a 
support group. Many groups are formed on their own, but may also be involved with the ASI on some level. Have 
more questions? Please contact us at one of the telephone numbers listed above and we will try to help. 
There are so Many Groups-What’s the Difference? 
There are over 50 support groups listed on the IRCA website. You may wonder why there are so many and what 
each does. While we cannot detail each group here, you will notice that most have a phone number, e-mail 
address, and/or website for you to contact to obtain more information. 
Groups may be organized based on a particular format. Some groups may “meet” entirely online at a set meeting 
time during which all members log-in to a specific website and share information via online chat. Other online 
groups may communicate via listservs, blogs, and e-mail at various times throughout the week, as each member’s 
schedule permits. Other groups may meet face-to-face at a set time and place. Some groups may utilize both 
online and face-to-face venues for their meetings. A few of the groups have their own newsletters. 
Groups may also be organized based on a particular focus. For instance, groups specifically for fathers, siblings, 
spouses, and grandparents of individuals on the autism spectrum are starting to garner more interest. These 
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groups tailor their information and support based on the needs of the target population which makes up the group 
members. Additionally, some groups may choose all disabilities as their focus, while others may narrow their focus 
to autism spectrum disorders, and still others may narrow their focus to Asperger’s Syndrome. 
Some groups may be formed to support parents with children of a particular age-group such as preschool, school-
age, or adult. These groups may be affiliated with a particular school or service provider. This may be apparent by 
the name of the group; however, you may need to contact the group for details on their potential affiliations. 
Each group should have a well-defined, specific purpose. Many are “peer” support groups led by parents of children 
with autism spectrum disorders or other disabilities and their purpose is to provide emotional support for the group 
members. This type of group may or may not have an educational or advocacy component. Education groups are 
also common, with an emphasis on providing information and resources, and not necessarily emotional support. 
Education groups present the latest information using video and/or special speakers, or by having members gather 
information and present their findings or experiences on specific topics. Some groups are task oriented and 
focused on fund raising or advocacy tasks, for example. Professionally led support groups are also available. These 
groups are led by professionals such as psychologists, social workers, counselors, or local school personnel. 
Groups may also be ongoing or time-limited. Usually, parent-led groups are ongoing with regular monthly or bi-
monthly meetings at a designated site. Time-limited groups are often run by a professional who presents a specific 
topic or curriculum. These groups will meet a specified number of times, and when finished, will open up to new 
members and repeat the topic or curriculum. 
Once you find a group that you are considering joining contact the leader and ask questions. Don’t be afraid to find 
out the group’s format, focus, and purpose. Try to attend at least two meetings in order to determine whether or 
not this group is one in which you would feel comfortable. 
If a group is not available in your area, or if you want a group with a different format, focus, or purpose, you may 
consider beginning a group of your own. 
Starting a Support Group 
Preparing Yourself 
When deciding to create a support group, there are few questions that need to be asked and only you can answer 
them. Questions such as, “Am I ready to be a support group leader?” and “Do I have the time to be a support 
group leader?” need to be addressed. You need to fully prepare yourself for the demanding and time-consuming 
task of assuming the role of a support group leader. You may benefit from setting some rules for yourself from the 
beginning. For instance, if other parents see you as an “expert” you may become overwhelmed with calls and 
requests for advice. By thinking about the role you wish to assume before the group even forms, you will be less 
likely to find yourself in an unsatisfactory situation later. You may wish to establish personal boundaries and 
limitations early and be prepared to tell each potential group member that you don’t have the answers, but you 
want to work together with them to find the answers. 
You also need to keep in mind that during the forming stages of your group, you will be setting the stage for your 
future role. You need to determine if you want to be a facilitator or if you want to be “in charge” of each meeting. 
You will also need to decide if you feel you will you be able and willing to allow others to share in group 
responsibilities and duties. Lastly, you will need to realize that while you may be contributing a lot of time and 
effort to the group, you may receive little recognition for your contributions. 
There are also personal concerns to be addressed before beginning a support group. Is your significant other 
supportive of you undertaking the additional responsibilities of a group leader? Are other members of your family 
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supportive of your decision to start a support group? These are discussions you need to have before you begin 
making concrete plans to form a group. Once begun, groups sometimes have a way of taking on a life of their own!
It is best to have a core group of two or three people who can help and support in the early stages of your group 
as well as on an ongoing basis. 
The Practical Aspect 
When you approach others with your idea about starting a group, they will have questions. Some of the questions 
you should be prepared to answer are, “When and where will you meet?”, “How often will you meet?”, “Is there 
going to be child care available?”, and “Will you have refreshments?” 
A meeting place is the first essential. Churches and public libraries are common places to hold meetings and are 
usually available at no cost to the group. City or county buildings, the YMCA/YWCA, service clubs, and other 
organizations in your area might also have meeting rooms that they would allow you to use free of charge. The 
ideal meeting location should be easy for people to find, centrally located, and offer free parking. 
Keep in mind that the first meeting place doesn’t have to be where your group will always meet. Once begun, the 
group might want to consider a location more conducive to your group’s size, a place with room for child care, or 
just a more convenient location. The point of the initial meeting is to get people together and share ideas relevant 
to your group. Try to remain flexible as group members may have resources and ideas that may alter your initial 
plans. Additionally, stay open to opportunities and don’t take it personally if changes are suggested. However, 
once your group is established, you should attempt to keep the meeting place consistent as frequent relocating 
could cause confusion and discourage people from attending. 
Finding Others 
What audience have you decided on for the group? If you wish to target parents of preschoolers, you might 
contact First Steps, local pediatrician offices, the preschool coordinator in the local public schools or other agencies 
that work with this population. Contacting schools will be the best place to start for connecting with families that 
have school-age children. Parents and families of adult children might be more difficult to find. If there is a Center 
for Independent Living that serves your county, that office might be a good starting place as well as the local Area 
Agency on Aging, the local Arc, or other service providers for adults with disabilities. Additionally, individuals at all 
of the above-mentioned agencies may be able to advise you of other possibilities for getting the information about 
your group to the families who may benefit from it. 
As you begin contacting various agencies and organizations, keep in mind the confidentiality aspect under which 
they are bound. They will not be able to give you information about other children or parents. They may however, 
based on the internal policies of each organization, post flyers and notices of meetings in common areas. It is also 
possible that individuals working with families, who may benefit from this type of support, will pass the information 
on to them. 
The IRCA maintains a listing of parents all over Indiana who wish to network with other parents. Either Brian 
Ketzner (bketzner@indiana.edu) or Marci Wheeler (mwheeler@indiana.edu) at IRCA may be contacted to get 
information on those families who wish to network. 
Ready to go Public? 
Keep in mind that you don’t need to contact every potential group member initially. You may wish to start with a 
few key people and then expand to the general public. However, if you prefer to target as many individuals as 
possible initially, you may wish to begin by posting a flyer at various places in your community. 
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Most laundromats have message boards as do other local businesses and agencies. 
You may also try contacting local churches or other places of common gatherings such as private clubs to find 
potential group members. For instance, service organizations such as Tri Kappa or Delta Theta Tau, the Elks Club, 
the Shriner’s Club, the Exchange Club, and others might help to advertise or support your group. Make a list and 
check off people you have contacted so you won’t duplicate calls or leave anyone out. Use the internet for further 
ideas and/or to obtain e-mail addresses of other organizations that may be able to help spread the word about 
your group. 
If you want more publicity, the newspaper might be your next step. However, keep in mind that newspaper ads 
can be expensive. Consider contacting your local newspaper to inquire if the paper has a column dedicated to 
community announcements that may provide an avenue for free publicity about your group. You may even want to 
ask the columnist to do a story about your group! 
You might consider advertizing on Facebook or starting a web page, listserv or blog to post information about your 
group. More and more families continue to connect and get information about resources in cyberspace. 
If you are going to make a flyer to post or write an announcement for the newspaper, certain things need to be 
included. Here are some ideas: 
Explain the goal of the group. State this in your flyer or announcement. If the format, focus, or purpose is still 
open for discussion, let your readers know that this is an information gathering group, or a group to explore 
possibilities and ideas. 
•
Identify who might be interested in the group. Provide a description of potential members; “parents of children 
with autism” or “if you have a loved one with autism” or “if you have a preschooler with autism.” If you want to 
open your group up to include all disabilities, be sure this is clear to your readers. You don’t want to imply one 
thing and then have people attend your first meeting and find that they were not the intended audience. 
•
Include the meeting place and time. Be sure to indicate the time zone as Indiana observes several different time 
zones across the state. Provide the full address of the meeting location. A sketch or map might be necessary or 
helpful. 
•
Specify if children are welcome at the meeting or if child care will be available. Note: if children are coming, do 
reservations need to be confirmed in advance? 
•
Provide a phone number or e-mail address for people to obtain further information. Make sure that you will be 
available to respond to these inquires. It may be helpful to establish a separate e-mail address that is 
specifically used for group purposes. 
•
That’s all you need to get started! Are you ready for the initial meeting? 
 
The First Meeting
Your first meeting probably won’t go as smoothly as you would like it to, so anticipate this and relax and do your 
best. Here are some ideas that may help you facilitate the initial meeting. 
Create a sign-in sheet and have people sign in as they arrive. Be sure to include a space for people to enter their 
phone numbers and e-mail addresses so that you will be able to contact them. You could also provide name tags; 
however, be aware that some people may not feel comfortable using them. If at all possible, someone should be 
available to greet people at the door. 
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Refreshments are a good way to get people mingling; they also give people who arrive early something to do while 
they wait. Keep the refreshments simple. Cookies or chips and coffee or bottled water are fine. After the first 
meeting, group members may decide to take turns bringing refreshments, or you could take donations and have 
someone be responsible for bringing them to each meeting. Ideally, you may find a local business willing to donate 
refreshments or funds with which you may purchase refreshments for your group. 
Have an agenda to hand out. An agenda gives people an idea of what is going to happen during the meeting. If 
you have a guest speaker, his or her name should appear on the agenda. The main agenda item should be setting 
a mission for the group. It is good to brainstorm ideas pertaining to the group’s mission, focus, and format, but 
keep it simple at first. You might want to write down what other support groups have done as a guide. You may 
also wish to discuss a name for the group if you haven’t already chosen one. Try to select a name that conveys 
what your group is about. 
The format for the first meeting should be simple, but organized. Consider having someone from a similar group 
speak briefly about their experiences. Agenda items might include finding out what others need or want from the 
group experience. You may want to have a form ready for people to fill out and turn in so that the responses may 
be reviewed later. 
The formal part of the meeting should last about an hour, but no more than an hour and a half. After this time, let 
people know that they can mingle for another thirty minutes or so, but it should not be an unending evening. 
Remind everyone that there will be more meetings and everything can’t be done at once. Setting time limits will 
help you organize as well as set group member’s expectations. 
You are on Your Way 
Please contact the IRCA to have your support group posted on the web site and listed on materials that are 
distributed to parents and professionals in your area. We want to help families find you and your group! IRCA staff 
is very supportive of parent groups across the state. Being on the IRCA list of parent groups will also keep you 
better connected to information distributed by IRCA that may be valuable to you and your group members. 
Congratulations! You have started a new community resource. You should be proud of this accomplishment! At this 
point, it is normal to feel anxious about the creation of your group. Try to recognize signs that indicate you are 
feeling overwhelmed. If you begin to feel stress, remember to allow yourself to delegate to others. Try to remain 
flexible to suggestions and offers of help from other group members. Also, try to stay organized by keeping all of 
your group materials separate from other household and/or community resource materials. 
Remember that new endeavors such as the creation and maintenance of your group will provide opportunities for 
both growth and change for you and your group members. Do your best to help the group stay focused on the 
established goals and mission. The key is cooperation, not competition. The challenges of having a child with a 
disability are many, but there are many joys as well. Sharing the ups and downs with others going through similar 
situations may provide you and your group members with the support you need during challenging times, and an 
opportunity to share all of the wonderful things about your children! 
Resources 
Parent Support Groups in Indiana  
http://www.iidc.indiana.edu/index.php?pageId=546 
Starting a Family Support Group: A Family to Family Resource  
http://www.inf2f.org/documents/F2FsupportgrouppamphletRevised09_000.pdf 
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Statewide Parent to Parent Network  
http://www.aboutspecialkids.org/Directory.aspx?keyword=%22family%20support%22 
Wheeler, M., & Ross, J. (2009). Finding or starting a support group. Bloomington IN: Indiana Resource Center for 
Autism. 
Secretary share\articles\FA 219\finding or starting 
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