Support Groups for Autism Spectrum Families

Parent Q&A

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  • My 5 year old was recently diagnosed with Autism and ADHD and I'm looking for an online support group for parents of young kids with Autism and/or ADHD. I know the internet can be a real rabbit hole, and want to be sure to avoid groups focused on autism "causes" or "fixes." I'd really love an autism-positive group that celebrates neurodivergent kids' strengths while offering ideas to help manage the very real behavior challenges (or just commiseration, because we feel so alone!). Our son is in a specialized preschool with access to OT, Speech Therapy, and we do family PCIT/Play Therapy, so our son is receiving a lot of support, but home life remains very hard and my husband and I are struggling and in need of parenting support. 

    Following this thread! I'm currently struggling to find a preschool for my son, who's turning 5, that will support/uplift him and his speech therapy. 

    There’s an East Bay Autism Parents and We GET It! Alameda County facebook group. I’m a member of both and they’ve been positive for  the most part.

    The "Ask Autistic Adults - Resource for Parents of Autistics" facebook group (https://www.facebook.com/groups/2138776736451241) is a really great resource where autistic adults respond with their perspectives and suggestions to parenting issues raised by group members.

    I don't know any local support group. But my child has ADHD, and one of my girl friends is mom to an adorable  non-verbal autistic little girl about the same age as your little one. We would be happy to meet you for coffee, chat, and offer you support in any way we can!

    Xoxo

    Stanford also has an online support group that does regular zoom meetings: autism_center_family Info Page (stanford.edu)

    I highly recommend joining the Good Inside community which has a great online support community (including live zoom calls) for parents of neurodiverse kids - and all parents in general. https://www.goodinside.com/

    Autistic adult here with suspected autistic/ADHDer kids--I love that you're looking for a strengths-based support group <3 I've found the FB group Autism Inclusivity very helpful, and also just following lots of neurodivergent content creators. Also happy to talk off-list if it'd be helpful. :) 

  • I’m the mom of a college-age daughter with high-functioning autism, hoping to connect with others in the same boat.  My daughter wasn’t diagnosed until high school, so we weren’t plugged into autism groups from a young age. At this point, all my friends have neurotypical kids and I am having a hard time connecting with fellow moms about parenting issues. I haven’t been able to find any recent BPN listings that are relevant, so any recommendations would be appreciated. I’ve attended Zoom support groups with AANE and those are somewhat helpful, but I’d really like to meet other parents here in the East Bay to develop more of a local community/network. If anyone is in a similar situation and might want to chat over coffee, please feel free to send me a direct message. Looking to meet others who “get it.”

    Hi there, I hear you.  In a similar situation, except mine is middle school.  It would be really nice to have a weekly support group … when daily life is such a struggle.  I’m happy to connect in the meanwhile. 

    I'd suggest this group:  https://yeswegetit.com/

    It is relatively new and growing quickly. We live in Oakland, but have been more active in the Contra Costa chapter. I know that there are parents with kids your age in the Contra Costa chapter, not sure about the Alameda one. They have many social opportunities for kids and parents.

    I am not sure about those who identify with "high functioning"...it is a bit of a controversial label. You may want to google "why is high functioning autism offensive." You will find some good info about why professionals and people with autism believe in abandoning that term and way of thinking about autism.

    Hi - mom of an eighth grade boy with ASD here. A great resource to find other parents is the Facebook group East Bay Autism Parents. Although many of the posts are by parents of younger kids, there are plenty of parents of older kids who may be interested in connecting. 

    Hi, I have a 14 year old daughter with ASD and ADHD. Also in the East Bay and would love to see if I was situations are similar enough that we could support each other. Would love to chat and see. Not sure how we move forward? Thanks for posting!

    I have a 20 yo who was diagnosed with ASD at 18. There is an active google group asnld-parent-support [at] googlegroups.co that has been a real help to me. It meets monthly on zoom and there are many email exchanges. Happy to connect with you! Feel free to email. 

    Hello,

    I would be interested in opportunities to meet with other families who have kids/teens or older, to build community and possibly a place for neurodivergent kids to meet. My daughter is in 6th grade and is having a hard time connecting with other kids at school. Would love to connect and chat.

    I hear ya. Looking for same. I have twin 20-year-olds. The boy we have known has ADHD and ASD for many years. His sister we only learned has ADHD in 2020, and we are right now assessing her for ASD.

    It is just so hard.

    S. Jones

    This is more pointedly in response to Fredclay's reply. I've been really keen to find a community for our neurodivergent teen. I'm not sure what such a group would look like as there are numerous challenges (the kids are all so different; they are of different ages; they often have a difficult time in connecting with others, particularly kids; it's no longer cool (for my 16 year, anyway) for your parents to shepherd you).

    I did have the idea of a low-stake regular meet-up, perhaps at a cinema, and then, if the group was feeling that way inclined, to go for a beverage afterwards. Another idea I had was a meet-up at 924 Gilman (the music venue in Berkeley. No alcohol. Teen bands).

    Lastly, if there are any serious chess players out there, my son would love to have some chess friends who are not old enough to be his grandparent.

    It would be great to get parents together for support and find ways to get teens together.  My kiddo was diagnosed on the autism spectrum about 5 months ago just before turning 18.  I looked at the group suggested by deets - but I don't want to get sucked back into facebook . . . Is there another way to connect to folks?!  We have enough parents in this thread to create our own support group.

    Hey! I’d like to connect if you want. I am struggling with using groups that engage in Facebook. It’sa pretty big barrier for me. I like your idea of trying to gather enough interest here and see what we can come up with. Parents of autistic children are nothing if not resourceful! 

    I would be keen for us to find a way to connect outside social media. Can we start an email group? Or Whatsapp, if that is available to everyone?

    Hi, I have a 13yo nonbinary child who just received a diagnosis and I am struggling to get my bearings too. I would be interested in talking with others, maybe building up a support group if one doesn't exist. 

    Hello ,

    I am in Bay Area , if you are okay we can chat over Zoom .

    Sangeeta 

  • I am the parent of a brilliant, charming, friendly autistic child. I am especially interested in connecting with parents of other 2E kids who are struggling to help their children transition into an independent away from the family home, and/or with parents who have successfully "launched" their autistic kids. I have been researching programs for transitional aged youth (CIP, Dragonfly Transitions,...) but nothing I've found seems quite right for my kid. I am also open to any referrals for services, programs, consultants.... We are connected with Regional Center, and currently my kid is enrolled in classes at Clearwater. Thanks, in advance. I look forward to hearing from you! 

    Hi there, I'm not there yet as my kids are younger, but are you acquainted w/Tilt Parenting? I just saw Debbie Reber from Tilt shared this pretty great looking crowd-sourced document called "2e Launch Resources" that seems directly relevant to your query. I hope it helps! If for some reason it's not accessible, hmu and I'll make sure you get it another way.

    https://docs.google.com/document/d/1eazeLp0_GPbrAd1cbs35DdERk3Hn_UHEb7_…

    Hi- I have a 19 yo autistic son (late diagnosed), we also used Clearwater. He is in college now at UC Berkeley and gaining independence gradually. I'm happy to talk with you about our experience and there is a great, local support group with an active google group and a once a month zoom meeting that has so much expertise and knowledge about all things autistic. I've been helped immensely by this group. It is a private group but if you are interested please reach out to me and I can connect you to someone who can help you join. 

  • Hi there,

    I am the mom to two girls.  My ten year old daughter was recently diagnosed with ADHD, Anxiety and being on the autism spectrum (would be considered aspergers if that designation still existed).  My husband and I are trying to figure out how best to support her and what to prioritize.  We have a plan in place for anxiety but would really like to get her support for the ASD including social skills groups, individual cognitive behavioral therapy and frankly would love for her to make a few friends that are in the same boat.  My husband and I are also looking for a therapist who can coach parents on how best to support their kid through this (ie. how do we tell her about the diagnosis, how do we help her deal with feelings of loneliness, how do we set boundaries / help guide her inappropriate behavior without making her feel bad about herself). I would love to speak to someone briefly who has been through this or hear suggestions here for referrals to therapists / social skills groups you have found most helpful.   Many thanks. 

    Additude.com  I get emails from them, but it is also an on-line magazine for ADD (which has overlap in symptoms with autism spectrum).  Your daughter is lucky that her parents are being proactive.  We kept thinking our kid was just quirky, and it was heartbreaking when he got older when he became very lonely.  It has become better with individual therapy.  I hope you find some good resources. 

    Hi, I hope you are well! My 2.5 year old son is going through the process of being evaluated for ASD. I would be happy to connect so we can share resources. I know of a great child/family psychiatrist in Livermore/Dublin near San Ramon (two offices). He is working with me and my husband to help us guide our son. Please message me and I'll give you my phone number and his contact info. 

    Sounds like you are off to a great start in providing support for your daughter. I highly recommend joining a terrific Facebook group to gather some of the information you were looking for. It is called East Bay autism parents. There are parents from all over Alameda and CCC in the group who are a wealth of information and can provide you with recommendations specific to your area. General resources are also The Regional Center and your school district’s Special Ed dept. If you are in CCC, The Care Parents Network is terrific and can set you up with a mentor parent. In terms of social groups, check out SocialThinking.com for info and I believe lists of providers as well. LMK if you would like to talk as I have been down this road too.

    I am local with a daughter the same age. I would be willing to talk to you and maybe have a play date. Autism was part of my field before children. My daughter does display ADH and Asperger qualities, as I do myself; we are managing them. Honestly, I am not a fan of Asperger Syndrome being removed from DSM. I find it to be fundamentally different from autism. 

    Hello! 
    I have a 9 y/o daughter who has high functioning autism as well. She is also much more of an Aspergers diagnosis as well and we call it being "aspie" in our house. Our supports are all through her school system. We live in Richmond and she will be entering 4th grade at Wilson (recently renamed Michelle Obama) elementary. It has a full inclusion autism program and has been AMAZING for our daughter. We recently told our daughter about her diagnosis by reading her the book "I'm an Aspie girl" that I got on Amazon. We framed it as a positive thing and my her dad is an Aspie as well so told her all the wonderful things that her daddy has as strengths that she now has. It was all positive for us and if anything she really identified with the book and had a "Me too!" kind of attitude towards it. We've been going this for years, so feel free to reach out if I can help out more or if you would even like our girls to possibly meet! :) You can email me at debg325 [at] yahoo.com

    Hi 

    My kids are a little older, my daughter is in college & my son is in high school & my career took a back seat so I could address the concerns you raise.  Along our journey I became certified Parent-Mentor with Support for Families, etc.  Everyone is so unique & the contextual situation is relevant to how you bridge & navigate your journey.  Both my kids have language-based learning issues, Sensory issues & AD(H)D, my daughter has anxiety as well but is extremely social, has close friends & doing well in college.  My son on the Asperger's side but they are polar opposites in many ways & I've had to approach bridging their gaps completely differently.  

    You can call me if you'd like.  

    Our son goes to school in the East Bay. 

    Good Luck,

    Christine

    Hi, 

    I just wanted to share a couple resources that could be helpful. My Aspergers/ASD son is 4 so I am more in tune with resources for his age, but I think all of these would work for your daughter. 

    Social Skills groups

    https://www.sevenbridgestherapy.com/services/child-adult-group-social-l…

    https://www.esnorcal.org/social-skills-groups/

    If you decide to go the ABA route, we really love Kadiant and our tech has been very helpful with practicing needed skills with my son, including social skills. 

    As for making friends:
    Camp Krem has been recommended to me by several people that I trust and is for kids /young adults with special needs, but my son is too young. They have one in the Bay Area and a parent support group too.  https://campingunlimited.org/

    This is a great site for overall resources in the Bay Area. https://www.sfautismsociety.org/bay-area-autism-nonprofit-guide.html

    Feel free to reach out if I can be helpful or you want to talk! 

  • Hello,

    I am a mom of two young boys with Autism.  I am looking for a parent support group in the east bay.  

    I appreciate any recommendations!

    I wish I knew of one, because I'd like to join one, too!

    Our son is 4.5 years old and has the Asperger's type of autism and we live in Berkeley.

    I'll be waiting to see if anyone has any recommendations, but in the meantime, feel free to contact me if you'd like to get together!

     Hi there! I am a mom  with one son who is also autistic. I attend a monthly support group meeting in San Ramon hosted by the Care Parent Network. If you're in Contra Costa County, they have other support group meetings throughout the county. Another great resource for information is on Facebook. There is a page called East Bay Autism Parents. It is a private group but you can asked to join. The members share lots of resources and information. Feel free to contact me if you have any questions!

  • Hi,

    My 3 year old son was diagnosed by OUSD with Autism.  He is on the more typical side of the spectrum and although the diagnosis is not a huge shock, we are trying to figure out what this will mean for him in school and beyond.  The school district offers us preschool at Emerson CDC in Oakland with six special needs kids and 15 typical kids with the goal to mainstream by the end of the year.  We are not thrilled with it and would like to know what our other options are.  We have not had a medical diagnosis yet.  He is the kind of kid where it is not immediately obvious that he is different and he is very social.   I have some questions and am hoping that someone who has gone through this can help navigate this a little. 

    1. I would love to find a GREAT pediatrician that can really take the time to help us get a medical diagnosis and help us with the ABA options.  Does anyone think this is even worth doing at age three? Our current pediatric group has been extremely unhelpful and we really have been on our own since we started all this at age 2.  

    2. Has anyone been through the Oakland or Berkeley special ed with a very high functioning autistic kid?  Has anyone done the public school preschool option?  We are actually thinking of moving to Berkeley anyway for our older typical kid and would love to know if it would be better.  We are also willing to move to Orinda or Lafayette.  

    3. We would LOVE to find other parents with high functioning Autistic kids or some sort of support.  I dont know anyone with atypical children, and it is feeling pretty lonely.  I also worry about him having friends, he really enjoys playing and interacting with other kids his age. My biggest worry is that his differences will affect his ability to have close friends.  

    4. Are there any private preschools or elementary schools that would be an excellent place for a highly functioning, very intelligent autistic kid?  

    Thanks! 

    sklevine123 [at] gmail.com

    Hi there,

    I have a 5 year old with autism who was diagnosed at the age of 3. We live in the Dublin- Pleasanton area and he has benefited from going to the DUSD public school preschool a lot, alongwith ABA at his afterschool program (with neurotypical kids involved as well). While I can't comment on the OUSD preschool, we have a had a good experience in the DUSD preschool so I can say that if the preschool is good it can be very helpful for the child.

    As for a parent community- I have found the Peninsula Parents of Special Needs Kids (PPSNK) to be an invaluable online community with tons of practical advice on the entire range of issues from medical to navigating school systems (private and public both) and lots of empathetic discussions. You can check out their website and sign up for their listserv: http://www.ppsnk.org/

    Another good resource is the Family Resources Navigators- and they specifically work in the Oakland area as well. http://familyresourcenavigators.org/

    Finally I found invaluable advice from the Early Support Program for Autism in Stanford University which runs special (mostly free) programs for parents of children on the spectrum. They help you navigate the whole search for an ABA provider, practical advice to help your child, among many other things. http://med.stanford.edu/espa.html

    Good luck!

    I am a parent of two kids with very high-functioning autism, one in private preschool and one in public elementary school. So I feel pretty well-qualified to answer your questions. First off, the diagnosis is a tough time. It's overwhelming emotionally, and then a logistical challenge to try to figure out services and what to do next. It does get easier as you settle into a new reality and a new routine. Now, to answer your questions:

    1. In my opinion, any supportive pediatrician will do fine. Most developmental pediatricians usually only see patients for diagnosis and follow-up related to the ASD. As long as you have a provider who is supportive and good at providing referrals will work well. Unfortunately, much like when you get sick as an adult, you are responsible for getting a diagnosis and getting additional services needed. This is unfortunately a huge pain and takes much time, especially initially when you're setting up services.

    2. You can typically get the medical diagnosis from a psychologist or a developmental pediatrician. I found most Bay Area developmental pediatricians had extremely long waiting lists. You don't mention cost being a factor, so all the advice I recommend in this message is what I think is best, regardless of cost. I recommend getting your diagnosis from Dr. Brynna Siegel at the Autism Center of Northern California (ACNC) in SF. Not cheap, but in my opinion worth the drive and money. And usually not too long a wait. Once you get the medical diagnosis, you can submit it to your insurance company to request ABA services. If they're covered by your insurance, I recommend BIA. In my opinion, they're the best ABA provider, hands-down.

    3. Regarding switching school districts now--it's hard to predict the future and know what your 3-year-old's needs will be by the time they get to elementary school. Especially after a few years of ABA, you will hopefully be amazed by their progress. My general advice is to do what's best for you and your older child and not make any decisions based on the younger child now. The quality of services is often extremely variable in a district, and you often don't know what a program is like until you start at a specific school. A district can have a great reputation, but the quality of services at the school is really what counts.

    4. Regarding preschool, we also didn't like the choice offered by the district. Another factor in the decision is that an ABA aide can typically accompany your child to a private preschool, but this is not usually allowed at preschools offered by the district. It has been ideal to have my son, who is very high-functioning, surrounded by typically-developing peers and learning from them. And having the ABA provider at school helps him immeasurably. Some schools I know of that have allowed aides to accompany very high-functioning kids in the past are Mustard Seed, Chatham School, Growing Light Montessori and Duck's Nest, but I'm sure there are many more. Your ABA provider may also be able to recommend preschools they think would be a good fit for your son.

    I believe there is a meetup group of high-functioning/asperger's families, but I have no specific recommendations regarding support. ACNC has some great, albeit expensive, programs that may be extremely helpful. Best of luck to your family.

    I am not a parent with a child with autism although I am a child development specialist and work with parents of kids with special needs. You should check out Burbank school in Oakland which has a few classes for kids with autism--mostly self-contained. There are options other than Emerson. If it doesn't feel like a good fit, listen to yourself....Please contact the family resource network housed with Bananas. It is staffed by parents of children with special needs and they know a lot about what's available-particularly the director, whose name escapes me for the moment. Also alameda county first five may have some resources but FRN is a good first step for you.

    Stanford has Behavioral and Developmental Pediatricians who see A LOT of young kids with autism. Heidi Feldman, MD is the director there. Absolutely, age three is NOT too early!!! There are lots of opinions about ABA. There are also other techniques which people find helpful if that technique is not to your liking. ABA is mostly what people think about (and about all that insurance will cover)but there are other ways....floor time (Stanley Greenspan) has shown great results with a different stance on what is helpful and normalizing. More family friendly....(in my opinion)

    There are all sorts of support groups out there for parents of kids with special needs. FRN probably knows of these also.

    Good luck....

  • I recently moved to Berkeley, and would like to develop a network of support that includes parents of autistic children.  My son is 2.5 years old and has just been diagnosed.  We are in the process of procuring services through insurance, but from what I read, this is only the beginning and there is so much I don't know, and so much I would like to discuss with other parents.  I hope to make some connections here and meetup in person soon.

    There is an online support group for parents of special needs kids. LOTS of conversations- questions and helpful advice. You could check out their website and decide if you'd like to subscribe to the listserv where you can ask questions and engage in discussions with  parents facing similar challenges or those who've been through similar stuff in the past. There are people with young kids and also older kids- it's been very helpful for our family. http://www.ppsnk.org/

Archived Q&A and Reviews


Questions


Groups for adult with probable Asperger's

June 2009

I'm a parent in my fifties who has just come to the realization that I have Asperger's. Its a self-diagnosis based on a lot of on-line tests and the research I have done re: my son, who has Asperger's too. I have no friends in the Bay Area, and have a lot of trouble making/keeping friends. Does anyonehave any advice for me? Or know of support groups for adults in the East Bay? Aspie mom


I have a friend who is also an adult with Asperger's, and she has a great web site that includes resources and local group ideas: http://lbnuke.com/resources/ She thinks all the groups in the Bay Area are in SF, but she is also in the East Bay so if you find anything else she'd love to hear about it! I'm glad that you are reaching out and hope you find some good connections. Aspie Ally


There IS an adult support group in the east bay which specializes in socialization skills for Asperger's and related diagnoses. Communication Works in Oakland 510-639-2929, www.cwtherapy.com - is a reputable resource I highly recommend you connect with! Their helpful staff offer services designed to assist your son also. My family is benefitting greatly with the help of CW. I encourage you to contact them asap. Feel free to email me also, if you'd like. I welcome it. Liz


I am forgetting whether the person with Asperger's seeking friends mentioned whether they were male or female, but Helmut Relinger, Ph.D., is a clinical psychologist in Berkeley who provides cognitive behavioral therapy for teenagers and young men, and his offerings include social skill groups for individuals with Asperger's. I have heard him talk about his groups, and I believe he emphasizes having clients organize and meet up for casual activities in the community together. Good luck! Anonymous


I've been hesitant to reply to this, but here goes...

I'm a 43 year old professionally diagnosed male Aspie. The ''professionally diagnosed'' part is important because self diagnosis is very fashionable these days (''Sometimes uncomfortable at parties? That's totally me.'') Professionally guided classes and groups that help you to function with NTs (NT = Neurotypical = not Aspergers) that are not willing or able to meet you and your Aspergers halfway are important and useful, but if you are looking to expand your social network, they may even be a bad thing.

Deeper friendships with NTs are perfectly possible. I'm married to an NT and we have an excellent relationship and a lovely 12 month old daughter. It is, however, very important that you be able to be yourself around them and make sure that they understand you sooner rather than later. No matter how much cognitive training you take, it will always be a layer on top. Give NTs some credit for ability to ''get'' Aspies if you are up front about it. They're better at it than you think.

There are Adult Asperger groups run by Aspies here and there (one meets in the SF main library). Rich


Lookng for support grp for parents of aspergers youth

June 2009

I am looking for other parents with children or adolescents with Aspergers ( or other nuerological challenges). I am interested both in something on line as well as meeting other parents. I am interested in developing some support and community. mom of nuero diverse youth


Hi, What a great idea. I live in Berkeley and have a 9 yr old son with Aspergers. It is very mild and almost imperceptible. The Doctor who diagnosed warned that that had its own problem because kids don't see it at first and then his love of facts and sometimes mildly ''off'' comments and answers to questions make him easy to tease. He is very bright and a sponge for knowledge and reading and facts. Also athletic and musical. But few friends his own age. I would be interested in finding other similar children and their families. Anyone else out there with a similar child? amydc


There is a parent support group for parents of kids with Aspergers and related disorders that meets monthly in Walnut Creek at the Barnes & Noble. http://www.aspergersresource.org/support_group_dates.html There are many, many other support groups and agencies, and you will find references to them on that site too. That site has MANY resources assembled by local mom Karra Barber, who is a force of nature and wonderful resource for us all. good luck and good for you for reaching out for more support. - Nancy


My cousin has a support group in Oakland that sounds like something you might want to try. Her contact information is: Oakland Hills Parent Support Group: Laura Stritzel: Laura2562 [at] sbcglobal.net. There is also a list of other support groups on our website at http://www.cwtherapy.com/supportorg.html. Hope this helps! Warm Regards, Elizabeth


Support for parents of Asperger teens & young adults?

Feb 2008

Does anyone know of a support group for parents of Asperger's teens and young adults? Thanks. Parent of newly diagnosed young adult


There's a public support group at the Barnes & Noble in Walnut Creek for parents of autism spectrum children every month, usually with very good speakers. It's a great place to connect with other parents who are without a doubt your best resource for learning more about how to help your child. Here's the url for their website: http://www.aspergersresource.org/support_group_dates.html. Although this group mostly draws families of younger children, often with more severe symptoms, it's nonetheless a great place to pick up leads. Hope that helps. Aspie mom


There is a fantastic support group for parents of Aspergers young adults and teens after high school that meets about once a month at The Springstone School in Lafayette, 1035 Carol Lane (on the site of Our Savior's Lutheran Church). The next meeting is Monday, March 24 at 7:00 p.m. The group is free and includes a core of compassionate, intelligent and savvy parents who have helped me more, as the parent of an Aspergers son, than any physician, speech therapist or neuropsychologist around. I always make the trip through the tunnel from my home in Oakland for these meetings. You might also be interested in an upcoming all day workshop on ''Post-High School Transition Planning for Young Adults with Aspergers, NLD and other Neurocognitive Deficits,'' to be held at Orion Academy in Moraga on April 12. See the flyer at: http://orionacademy.org/documents/2008_Transition_Seminar.pdf.
My heart goes out to you. Aspie Mom


Asperger's support group?

July 2003

Looking for Asperger's support group in local East Bay. Any leads? thanks much


Try contacting the Learning Disabilities Association, East Bay Branch. You can reach them on the web. Good luck. Linda