STARTING A PARENTS SUPPORT
Parents of a child on the autism spectrum often attend a support group where other parents understand
they issues they face. These groups may take the form of providing
relevant information, relating personal experiences, listening to
others' experiences, providing sympathetic understanding and establishing
social networks. A support group may also provide ancillary support,
such as serving as a voice for the public or engaging in advocacy.
Support groups maintain interpersonal contact
among their members in a variety of ways. Most groups have traditionally
met in person in group sizes that allowed conversational interaction.
Support groups also maintain contact through printed newsletters,
telephone chains, internet forums, and mailing lists. Some support
groups are exclusively online. Your nearest autism or Asperger's
association should have a list of support groups in your area.
Since at least 1982, the Internet has provided
a new venue for support groups. E-mail, forums
and Internet bulletin boards have become popular methods of communication
for self-help groups and among facilitated support groups. The Open
Directory Project (ODP), also known as Dmoz, has directories with
lists of support groups. The volunteer editors adds support groups
to the lists even when the forums are not submitted. Google’s directory
is using the ODP directory. It is not difficult to find an online
support group, but it is hard to find a good one.
Starting your own support group
Is there an existing group in your area?
There may not be any support groups in your area
in which case you may choose to start your own. Check first with
your nearest autism or Asperger's association that none exist. They
may also provide some resources and help promote your group once
it is up and running.
How much time and effort can you afford?
You'll need to work out how much time you are
willing to dedicate to the group. You may only want to have informal
chats over coffee that take little effort. On the other hand, you
may want to establish a newsletter, memberships, and guidelines
for discussion each meeting in which case you will need a lot of
Who will the group be for exactly?
Define your target group. Is it for parents whose
child only has Asperger's? Any Autism Spectrum Disorder? Other
developmental disorders? It can pay to find the email addresses
of existing support group leaders on the Internet and ask them how
they set their group up, and how diverse their 'membership' is.
Getting the word out about your support group
Promote your support group. Your nearest autism
or Asperger's association may promote your group on their website
and newsletter. Small community newspapers may run a small article
on Autism Spectrum Disorders and highlight your support group,
or at least run an ad. Any local schools that are set up for children
with developmental disabilities may tell parents about your group.
Posters can be put up at schools, churches, doctor offices and supermarkets.
Setting guidelines and delegating tasks
Once you have a small core of parents who are
keen, develop basic guidelines and tasks:
• Where and how often will the support group meet?
• Will their be a budget and who controls the
• Who will be responsible for various tasks in
running the group?
• Will there be child-minding involved?
• Will there be refreshments?
Once other people are involved, guidelines need to be established.
You may have wanted to run an informal group. Others may want a
highly structured one with guest speakers. Were the meetings to
be in someone's home, or in a community hall? Be flexible, incorporate
everyone's suggestions and form the basic guidelines that will allow
your group to get going.
Before each meeting, mail or email a handout with the topic for
discussion, when and where the meeting is, and contact numbers of
the other parents. Don't be discouraged if very few people show
at first - these groups take time to develop! Encourage parents
to get in touch with each other outside of the group. These friendships
can be a huge help when parenting gets exhausting.
Contact local professionals about being a guest
speaker once you have a good number attending.
Have definite time limits so that babysitting
is easy to coordinate.
Have guidelines for handling people who talk too
much or like to interrupt.
Remember to laugh and have a good time.
Always sit in a circle - parents want to share,
not attend a lecture!
See the Family
and Carer issues section of the website for more information.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
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