When my son was first diagnosed with autism at age 22 months, one of the first things I desperately craved was to talk with other parents. I had so many questions.
What just happened?
Where do I start?
What early intervention program do you recommend?
What therapies have your tried?
Why isn’t this therapy covered by insurance?
How do I get my kid in this school?
Why is he flapping his hands in front of his face?
He’s not talking. When did your child start talking?
I’m sad, tired, scared and lost. Are you?
Will I always feel this way?
And who better to ask than those parents who had already experienced it? I went to a few support groups. I asked my questions. I did not get answers.
I soon discovered that “it” was a very individualized journey. Our path with autism was going to be as unique and complex as our son. Other parents were working on their own questions and answers but they weren’t mine. So I held off on attending a support group for several years.
I hunkered down and focused on the dizzying amount of work ahead for me and my family. I had to quit my job. We could not afford the therapies that were recommended. Meanwhile I’m told early intervention is crucial! Start now!
Back then I was told he needed to be in ABA at least 20 hours each week, speech therapy, occupational therapy for his sensory concerns, developmental preschool, opportunities for social interaction, and we were trying the GFCF diet along with every form of supplement that claimed to increase his word output. I was grinding DMG into the poor kid’s ketchup – which he promptly stopped eating—to this day.
My daughter was three years old and assumed the role of a seasoned ABA therapist, holding the fruit snacks behind her back until he made eye contact. I played with her less and focused on Arthur, hiding food behind my back to elicit desired outcomes right along next to her. My dear and beautiful friends started fundraising for the high cost of ABA. I went from fellow parent at the park with our Zip Lock bags of cheerios to a charity case. They most certainly did not make me feel that way. I just missed being normal and I didn’t want to be special. Meanwhile, Dad was working hard to pay the mortgage after losing one income. The emotional stress and financial strain did not keep the fire of love aglow. Our marriage was struggling.
While most parents of children Arthur’s age were just starting to get a full night’s sleep, go out on date night with their husband, and sit back in that lawn chair at BBQs, we were poring over insurance appeals, laminating PEC symbols at midnight, searching for that elusive reinforcer toy, and trying to comprehend the difference between floor time, discrete trial, RDI, precision teaching and doing our best to adjust to this new club where we were involuntarily assigned.
Life was turned upside down. I had the same beautiful amazing son. New language. New rules. New life. Everything had changed in a matter of months.
This is when I could have used a good support group.
What does a “good” support group look like?
The answer varies, but overall elements of a quality support group include:
- A group of people seeking support who gather voluntarily on a regular basis to meet certain needs they share in common. The group size is usually small.
- Operate on the principle that everyone in the group stands on equal footing. No one person has more authority or power. Members are encouraged to talk about their concerns, issues, and feelings that relate to the focus of the meeting (in our case, life with autism) as well as responding to others who share.
- Some groups use a lay or professional facilitator, while others do not. A facilitator will be concerned with guiding the group process that may include setting ground rules and keeping the conversation balanced and on track, and creating a space where participants feel comfortable and empowered to have authentic feelings and expression in a confidential and safe environment.
- You should feel invited to participate fully and freely. This includes being listened to and responded to.
- It should not feel like a “bull session” during which people air their thoughts or argue their beliefs about a subject. A support group requires a more personal investment on the part of its members.
- A support group is not necessarily a therapy group, but they often have a very therapeutic effect.
What is the potential benefit of a support group?
- They affirm the importance, worth and dignity of each person participating.
- Something positive happens when people choose to depend upon each other and when they hold themselves accountable to one another.
- They promote health and healing. They provide an opportunity to live a fuller life.
- They can help you release worry, overcome pain and feel hope.
- The bring people closer together and can offer an opportunity for friendships to form outside the group.
- Support groups work! They help people cope, learn, grow and change. A support group can make a real and measurable difference in people’s lives.
(From Effective Support Groups by James E. Miller)
Seattle Children’s Autism Center currently offers two support groups for parents and caregivers who have a child with autism. In addition, there are a number of other support groups in the area.
ALLY Autism Living Life and You: For parents of children who are 7+ years old and have severe/profound autism. This support group is open to the community.
First Steps Autism Support Group: For parents of Seattle Children’s Autism Center patients who are age 6 and younger.
We also maintain a list of autism support groups offered in the region:
LOCAL SUPPORT GROUPS
- Island Autism Moms and Dads IAM is a group of Moms and Dads from Bainbridge Island, coming together to focus on hope, inspiration, perseverance and support towards progress and recovery of our children with autism. Our group was formed in October 2007. We meet once a month to talk, learn, laugh and nurture hope. Http://islandautismmoms.blogspot.com/ Held: Once a month. Various locations.
- Bellevue Father’s Network Support Group (Autism and other developmental disabilities) Contact: Greg Shell 425-747-4004 ext. 4286, Sam Jones 206-784-1483 . email@example.com or Jack Baker 206-322-5391 www.fathersnetwork.org Held: Twice a month from September through June at the Kindering Center
- Bothell Parent Support Group (Parent-formed and led) Contact: Michelle Bielicki 206-412-1776 Held: Wednesday’s 7-9pm at Lion’s Den Café in Bothell
- Des Moines Autism Educational/Support Group Contact: Rhonda Mate and Tami Graham at firstname.lastname@example.org
- King County Open Doors Support Groups (for developmental disabilities and Autism for Spanish, Somali, Korean, Somali, Vietnamese, Chinese) Contact: Ginger Kwan email@example.com 253-216-4479 or firstname.lastname@example.org Held: Varies by group within King County
- Lynnwood Asperger Parent Support Group (hosted by Lutheran Community Services Northwest) Contact: Carmen Rasmussen 425-670-8984 ext. 22 email@example.com Held: TBA
- Maple Valley Autism Parent Support Group Contact: Robin Monahan 206.715.0136 firstname.lastname@example.org Held: Each Tuesday of the month 6:30-7:30pm at the Maple Valley Community Center
- Mom’s Self Care Group Session with Dr. Liliana Sacarin Contact Sacarin Learning Center for dates and times: email@example.com (fee for service)
- Mountlake Terrace Autism Parents Participating Learning Encouraging (APPLE) Group(Autism, HFA, Aspergers) Contact: Tonya Williams 425.774.5809 and firstname.lastname@example.org and at facebook.com/joysofautism Held: First Thursday of the month from 6:30-8:00pm. Mountlake Terrace Christian Church, Childcare available $2/child
- Orcas Island Parent Support Group Contact: Beth Jenson, MA 425-830-2493 and email@example.com Held: TBA
- Padres Unidos (Spanish language) Support Group Contact: Sugely Sanchez: 425-258-2459 x106 firstname.lastname@example.org Held 3rd Friday of each month
- Parent to Parent (P2P) The Arc of Washington (includes Ethnic Outreach) Contact: Susan Atkins at 1.800.821.5927 to find your local Arc and P2P program or email email@example.com www.arcwa.org/getsupport/parent_to_parent_p2p_programs
- Pierce County Special Families (ASD and Associated Disorders such as ADD, ADHD, etc) Contact: Angela Fish at firstname.lastname@example.org
- PURPAS – A Family support group for young adults with high-functioning autism Wednesdays 6:30pm to 8:00pm at Henry Foss High School. 2112 South Tyler Street, Tacoma, Rooms 213A & 215A. For more information please contact Susan Jackson at 253-565-2266 ext 107 email@example.com Sybille White at 253-565-2266 ext 118 firstname.lastname@example.org
- Pierce County Community Inclusion Program (All Developmental Disabilities) Contact: Susan Jackson 253.565.2266 and email@example.com Held: 3rd Thursday of the month (light dinner included)
- Puyallup Conversations and Coffee (All developmental disabilities) Sarah Miller firstname.lastname@example.org or Susan Jackson 253.565.2266 and email@example.com Held: Last Monday of the month at the South Hill Mall Panera Bread
- Puyallup Shoulder to Shoulder Ark Angel Support Group (hosted by Good Samaritan, for ASD and DD) Contact: Diana Grijalva at 253-403-3638 firstname.lastname@example.org and Jennifer Mann at 253-677-1331 email@example.com Held: 2nd Wednesday of the month from 6-8:30 pm at the Dally Tower Conference Room, Good Samaritan Hospital
- Seattle Children’s ALLY Parent Support Group (for parents who have children with severe autism, age 7+. Contact: Lynn.Vigo@seattlechildrens.org or 206-987-3571 Held: 1st Thursday of each month 6:00-7:30pm at Seattle Children’s Autism Center. No childcare available. Email for intake.
- Seattle Asperger’s NW Support Group (for Asperger/HFA/PDD children and young adults) Contact: Karen Roe 206-782-2232 MasterCoachKaren@KarenRoe.com www.aspergersnw.org/support Held: Dates vary from 6:30-8:30pm at Seattle Children’s Home
- Seattle Asperger’s Support, LLC This agency does not have a free standing parent support group. They serve children preschool through high school and use social thinking methodology as a foundation for their work which does include DBT techniques for emotional support. www.seattleaspergerssupport.com
- Seattle Aspiring Youth Parent Support Group ( for HFA and Asperger’s) Contact: Ben Wahl 206-517-0222 and firstname.lastname@example.org and www.aspiringyouth.net
- Snohomish County ARC SASSIE (Snohomish Autism Spectrum Support Information and Education) Contact: Tracie Diemert 425.258.2459 email@example.com & Kelly Church Kelly@arcsno.org Held: 4th Monday of the month 7-8:30 pm at the ARC office in Snohomish.
- Stanwood/Camano Island Parent Support Group (for ASD and DD) Contact: Sara Stiers at 206-235-1236 or firstname.lastname@example.org Held: 3rd Thursday of the month at 6:30pm at Cedarhome Baptist Church, 29000 68th Ave NW, Stanwood. No childcare available.
- Supporting Parents of Autism (SPA) Group – This is for parents who have children on the Autism Spectrum. Monthly in West Seattle, 2nd Tuesday of the month, 1-2:30pm for support, resources and community. http://www.washingtonautismadvocacy.org/updates/
- Tacoma Paving a Unique Road for People on the Autism Spectrum (PURPAS) Support Group (for HFA and Asperger’s Adolescents and their Families) (Spanish Groups available) Contact: Susan Jackson 253.565.2266 and email@example.com Held: Every 2nd Wednesday 6:30-8pm at Henry Foss High School in Tacoma. Groups also available.
- Tacoma Autism and Tourette’s Family Support Group (all ages) Contact: Carla Richards at firstname.lastname@example.org
SOCIAL MEET UP GROUPS
- Kirkland/Bothell Fantastic Fridays and Autism Contact: http://eastlakecc.com/groups/ click “find a group” and click “Support Groups, Fridays Meets: Friday’s from 6-8pm. Locations vary.
- Northwest Special Families (all developmental disabilities) Contact: www.northwestspecialfamilies.org Meets: Varies. King County area
- Parents of Sensational Kids in South Puget Sound (ADHD, Asperger’s, HFA, Sensory Processing) Contact: Jenny Dooley www.meetup.com/Parents-of-sensational-kids-Puget-sound-support-and-play/ Meets: Varies. Olympia/Kitsap/Bremerton areas
- Seattle Autism Meet Up (Hosted by Integra Natural Wellness) Contact: Find us under “class schedule” at http://integranaturalwellness.wordpress.com/ Meets: Varies.
- Redmond Eastside HFA/Asperger’s Support Group Contact: Brian Atwill 206-779-5551 Meets: Varies.
- Living with Asperger’s in Seattle Contact: Steve Becker 206.935.2479 or email@example.com or www.stevebeckerassociates.com Held: Each Wednesday from 6-7pm on Capitol Hill, Seattle, WA. (fee-for-service; sliding fee scale available)
- Seattle Asperger’s Syndrome Adult Socializing Group Contact: Victor Hellberg 206.362.0922 or Fred Hoffer firstname.lastname@example.org 561-422-1331 or www.seattleautismspectrumsupportgroup.wordpress.com Held: 2nd and 4th Wednesday of the month at Grace Lutheran Church in Greenwood from 7-9pm
- Tacoma Area Coalition for Individuals with Disabilities (TACID ) (Adult transitioning for DD) Contact: Lori at 253-565-9000 ext. 21
- The Square Peg Social Club of Washington Contact: Linda Justham 206-780-0124 or email@example.com Held: Local groups meet in:
-Arlington: 3rd Saturday of the month at the Greek Orthodox Church at 6 or 7pm
-Olympia: 1st and 3rd Saturday of the month at the Evergreen State College at 6 or 7pm
-Seattle: 2nd Saturday of the month, location TBA at 6 or 7pm
-Seattle: 2nd & 4th Wednesday of the month at the Grace Lutheran Church in Greenwood at 6 or 7pm
-Seattle Ladies Group: 4th Friday of the month, location TBA at 6 or 7pm
-Des Moines: 3rd Saturday of the month at Universal Unitarian Church
-Bellevue/Redmond : 4th Saturday of the month at River Park (Summer months) and TBA (Winter months) at 6 or 7pm
-Bothell: 1st Sunday of the month at 11am (at local coffee shops)
- My Autism Team www.myautismteam.com The social network for parents of children with autism (endorsed by AutismSpeaks)
- Online Asperger’s Syndrome Information & Support (OASIS). Nationwide. www.aspergersyndrome.org
If you find any of the information provided to be inaccurate or out of date please contact Katrina.Davis@seattlechildrens.org or Kylie.Keller@seattlechildrens.org
DISCLAIMER: The information in this referral List is provided as a courtesy by Seattle Children’s Hospital and its related organizations. Seattle Children’s Hospital expressly disclaims any representation or warranty, express or implied, concerning the accuracy, completeness or fitness for a particular purpose of the information. Persons accessing this information assume full responsibility for the use of the information and understand and agree that Children’s is not responsible or liable for any claim, loss, or damage arising from the use of the information. Reference to specific services does not constitute or imply recommendation or endorsement by Seattle Children’s.