By Karen Krejcha -
One of the most common challenges for youth and adults in the autism community is the feeling of isolation. This is true of those identifying on the autism spectrum as well as parents and family members. The good news is that when people meaningfully connect with someone else who “gets it”, who has traveled a similar path or shares a similar neurology or demographic makeup, that feeling of being alone on the world lessens. But how do you find your tribe?
The autism spectrum is not one-size-fits-all. Neither are the makeup of support groups. A peer-led group might be ideal for some, whereas a professionally-led group works for others. Online groups are convenient for asking quick questions, sharing successes, challenges and cat photos, however, some people prefer face-to-face connection.
Whether you’re looking to connect with people new to diagnosis or who have been around the block, many in the autism community are eager to help. If you’re looking to explore neurodiversity, find a faith-based gathering or score some social connections, there are a wide range of autism-related support groups within the Portland and Southwest Washington metro area.
Finding the right group fit for you or your family members can often take time, so here are some points to ponder in your journey.
Affiliation - Are you looking for a support group affiliated with an autism nonprofit, place of faith or health care provider? Often affiliated groups can provide an additional educational component or connect you with other programs and services. Perhaps you prefer a more casual parent gathering? Many parent-led groups will meet at homes, restaurants or out in the community.
Audience - Are you looking to meet parents of teens and tweens? Want support for the siblings? Curious about connecting with other adults on the spectrum? Interested in a Moms’ or Dads’ night out? Prefer your meeting in Español? Groups like this exist in our region as well as online.
Location - Where is the meeting located? In an office building or someone’s home? What part of the city? Are there accommodations? Is it sensory-friendly? Is there parking or access to public transportation? Driving 30 miles might not seem like a lot when you meaningfully connect with other people, however, most of us are grateful to find a group convenient to home or work. Those in outlying areas often prefer supplementing online. Some groups have both in-person and online options to keep people connected.
Time & Day - Some groups meet in the evenings to accommodate working parents, while others meet during the weekday. Some meet monthly while others gather more frequently. Some offer supplemental social get-togethers, while others are for a set period of time. What are your needs?
Demographics - Are attendees single or married? Working or stay-at-home? Millennials, Generation X or Baby Boomers? In Portland or Vancouver? Some groups tend to naturally attract similar demographics while others are incredibly diverse. This impacts conversation topics. Do you have a preference?
Attitudes & Beliefs - Tying in with demographics, do group leaders and members impart a helpful and positive attitude? Are they likely to comfort? If you need to cry or vent, do you feel you’re in a safe space among peers or is it toxic? Do members believe in Autism Acceptance? Do they welcome hearing input from autistic adults? Are they resourceful rather than judgmental? This is a very tricky thing to gauge, particularly when attending in-person groups as dynamics change depending on the participants, particularly in larger gatherings. With online groups, you have the luxury of lurking, reading past posts and getting a feel for personalities. You can engage when you’re ready. While there can be a huge benefit to learning from and engaging with others who think and act differently, some people prefer specificity (e.g. redheaded parents in their 30s who like alternative rock, Minecraft, and the Elizabethan era).
Expectations and Rules - When you are looking for a group to feel safe in, try to learn in advance what the expectations and rules are. Can you bring along children? Is it fragrance-free? Before you go to the group, if there is contact information, reach out to the group leader and ask what about expectations and what happens in a typical meeting. Is there a confidentiality or privacy statement at the beginning of each gathering? If not, be careful what you are willing to share as there is no expectation of privacy.
Guest Speakers or Pre-Planned Topics - Some groups bring in guest speakers and allow you to attend even if you’re not a regular group member. This can be a positive way to learn about a topic and have the opportunity to connect with others with similar interests or concerns.
Cost - Is the group free or is there a cost to attend? Do you need to bring a snack? Is there a membership fee and if so, what do you receive? If there is a cost, is the group nonprofit, for-profit or casually structured? Professionally-led groups or gatherings with guest speakers often have a fee attached. Sometimes this can be waived or paid for if you are receiving disability benefits.
There are many benefits in finding a support group that meets your needs but one of the biggest advantages is in realizing you are not alone in your journey. Take time to research the many different options there are within our community and make sure to try a group out more than once before you decide if it’s right for you.
Ideal groups will promote a feeling of acceptance and empowerment and the opportunity for lifelong friendships.
The right group will help you feel safe, supported, understood, and empowered in your journey, whether you are on the autism spectrum, a parent, a sibling, a caregiver, a spouse or a family friend.
REFERENCES:
For extensive in-person and online support group listings in the Southwest Washington and Portland, Oregon metro region, please check out:
Spectrum Life Website (You're here now! Check our directory listings!)
Autism Empowerment Resource Guide & Support Center (OR/WA) - http://bit.ly/aelocal
Autism Society of Oregon Support Groups by Region (OR/WA) - http://autismsocietyoregon.org/support/support-groups-region/
Other Online - Local:
AE Adult Autism Support Group - www.facebook.com/groups/adultautismsupportgroup/
AWEtism We Embrace (Neurotypical & Neurodiverse) - www.facebook.com/groups/awetismweembrace
Portland Autism Moms (PAM) - www.facebook.com/groups/WAMmoms/
Special Celebrations - Support, Resources & Events - www.facebook.com/groups/specialcelebrations/
Vancouver Autism Moms - www.facebook.com/groups/VanAutismMoms/
Online National:
Autism Women’s Network: - www.facebook.com/AutismWomensNetwork/
Wrong Planet - www.wrongplanet.net
This article originally appeared in the Spring 2017 edition of Spectrums Magazine, now Spectrum Life. Resources above were current at the time of publication but may now be outdated.
