It didn’t take long after getting A-Man’s autism diagnosis to realize that I wasn’t a very popular autism mom…
I use identity language. I listen to disabled self-advocates. I
celebrate neurodiversity, and I’m doing all that I can to teach A-Man self-advocacy.
When I joined a few autism support groups I quickly realized that these differences were extreme, and they made it difficult to fit in.
So what do you do when you don’t fit in autism support groups?
When You Don’t Fit in Autism Support Groups
I really tried to fit in. But then a debate about autism therapies would start and I’d be severely outnumbered as a parent trying to support autistic self-advocates opinions.
Or I’d say “my son is autistic” and several parents would lecture me about saying “has autism”.
Or someone would tell me that I couldn’t understand because A-Man and I are both considered “high functioning“.
I needed an autism support group where autistic self-advocates like myself feel safe.
I needed an autism support group where posts about “hating autism” weren’t okay, and where the parents were really trying to understand and accept their autistic kiddos instead of changing them to act more neurotypical.
Why Autism Moms Need Support Groups
See, I’m not anti-support group at all.
I really believe that autism moms need support groups.
While there are tons of benefits to autism, there are a lot of hard moments, too.
There’s a lot of learning that happens while we try to understand our autistic kiddos, and there’s bound to be some stumbling blocks along the way.
While we do our best to explain autism, sometimes we need a group where everyone already understands.
We need a group where we can post about picking the wrong bowl color and how that derailed our entire day, and no one will say “well my kid would never get away with that!”
The Problem With Most Autism Support Groups
The biggest problem I have with most autism support groups is that autistic voices get drowned out.
Parents tend to be set in their ways, and they really don’t want to hear that what they’re doing has hurt autistic people before.
Autistic self-advocates who mention certain parenting practices could be harmful are seen as “bullies” and their comments and posts deleted, or they even get kicked out of the group.
This only furthers the divide between parents of autistic kids and autistic self-advocates.
I know first hand how wide this divide is, as I’ve got one foot on each side.
I’m an autism mom and I’m autistic.
It makes my heart hurt when a group of autism parents will listen to me as a mom-blogger but questions me when I’m presented as an autistic person.
We need a group that connects these two sides of the autism community.
Finding a Support Group That Embraces Autism
I set out to find a support group that embraces autism, and I haven’t found any that were quite the right fit.
I want a group where autism moms who want to raise their kids to be strong self-advocates can come for support.
A group where autistic self-advocates can post without fear of having their tone policed and being called bullies.
A group where posts about hating autism and other ableist posts just aren’t allowed.
Well, since I haven’t found just the right group yet, I’ve decided to create it for moms like you and me.
An Autism Support Group Just For You!
Embracing Autism is a new group on Facebook that aims to understand and celebrate autism of all kinds.
This isn’t a group only for parents or only for autistic self-advocates.
It’s a group that aims to cross the wide divide in the autism community and help parents and self-advocates learn from each other to best help the next generation of autistic self-advocates.
If you’ve been looking for a group where you can work towards understanding, accepting, and embracing your child’s (or your own!) autism with other parents and self-advocates on the same journey as you, you’ve found your place.
I don’t promise to know all the answers (or even half of them) but I do promise to be there to support you in your journey, whichever side of the divide you’re on.
Together we can celebrate successes, support each other on hard days, and step closer towards truly embracing autism each and every day.
Click the image below and tell me a bit more about your specific situation to get access to the Embracing Autism group!
I don’t fit anywhere but “limbo city” because my child’s lovely official diagnosis is slightly autistic tendencies…lol. I’m sorry because I know it’s not funny, but in a way it just is. What are we supposed to do? We fit nowhere. My son and I are in a vacuum where it definitely feels no one on the planet understands. I have very little time to try to nourish my soul when it comes to dealing with all the above diagnosis entails, but I was told there might be an online forum that could help. I’m so glad to read your blog. Thank you.
I think you’d be more than welcome in the new embracing autism group. I know it’s hard when you don’t have the official diagnosis, but you might find yourself at home. <3
I’m an autistic mom too and I have been asked to leave support groups because I “judge” parents who are ableist or cruel to their children. I get this….
I feel like some of those groups are so toxic and they actually make people feel more helpless and so much less likely to be the kind of parent an autistic kid needs. A space for parents to get real support instead of dwelling on “fixing” a child who is not broken is so necessary and important. It’s awesome that you are doing this!
I’m so sorry that’s been your experience. :( It’s so hard being one of the only autistic voices in groups like that. The voice saying “It’s not okay that you’re treating your kids that way”. :/
OMG your spunky attitude sounds so familiar to me… I offend people prob more item than I should but I do not have that filter most have… I say it like I see it and see no need to sugar coat it. What I really need is someone to email me or something to that affect so I can get info besides what you can Google. My little one has not actually been diagnosed as being autistic I just know there are a lot of similarities and I have 8 kids none of whom have been like this… so if u could help me out it would be greatly appreciated…
hello! thank you for this post. i have found myself in the same situation and as a result did the same thing – created a local group. we met once a month for coffee and its divine. thank you for loving your little guy just the way he is!
rebekah
on instagram at mommakrueger
Not on Facebook or I would love to join your group!
I’m so glad i found your blog. My daughter was recently diagnosed with autism. She’s always been sensitive & anxious, but when she hit puberty dear lord help us all!! A friend who works with autistic students suggested I have her evaluated, as did her therapist at the end of her first session. When M. received her diagnosis, she went home and in typical M. fashion, perused the internet. She came to me an hour later, with a look of relief on her sweet face. “Mom, it all makes so much SENSE now!!!” My heart burst. On the other hand, when i told her father, my ex, his response was one of near-horror, “So what does that mean now?” Mean? She’s the same M. she was 5 minutes ago.
Sometimes I do hate autism for the difficulty my son has with daily life but I do not wish to change him. I want the world to be an easier place for him to navigate and I wish I could just manage everything for him better so it wasn’t such a struggle. I like the sound of the group!
Carla recently posted…Peaceful parenting
Wow! Right on! (Yes I was lived 10 years of my life in the seventies!) I also had a daughter born in 1977 and a son born in 1981. Both, I eventually found out, are autistic. High functioning. In the 70s and 80s they didn’t diagnose high functioning autism. I tried to find out what made them tick. I would have loved to have been in a group like yours and thank heaven for what you’re doing. Thank you!
Hi, guys!
I’ve been looking for a group like this for a while . My handsome son is 4 and he was diagnose before turning 4. He is so smart and sweet, loves hugs and kisses … he loves to be around other kids . He is still have difficult to communicate….like other kids his age . I live in Brasil and unfortunately we don’t have much supporting groups as in usa. I would be really happy … To be part of this group.
Thxs !
As an Autistic person myself I hate when my mum calls herself a superhero or talks about a new therapy method that one of her 43 support groups suggested (that is how many she’s in I counted) and then I go to one session and say it’s not for me, so she tells me that her friend kristy said that it would help me or I just wasted her money. I’ve never found support groups or therapy groups helpful as I tend to disagree with literally everything that’s suggested and nothing works for me. Would I be able to join this group even though I’m not an autism mum just as someone who’s autistic.
I actually want to join the Facebook group. I am still unclear how to do that. I filled out the thing.
Hello, My name is Bri. I have a beautiful wonderful spunky 3 year old named Ayla who has high functioning autism, and im currently 14 weeks pregnant with a baby boy. I am looking for somewhere I belong and im not even sure if this is the right place for me. You see, my daughter is actually in the care of my parents. Im a recovering heroin addict. My daughter was taken by CPS when she was a little over 18 months old and has been in my parents care since then. I actually had the chance and fought really hard to get her back in my care, but my daughter was only diagnosed a few months ago and ive done everything I could since then to learn all about her diagnoses. Because of this though I have chosen to open adoption with my parents. I dont want Ayla to have to change her entire life, and have to learn a whole new routine because of the mistakes that I have made. She knows that my mom and dad’s house is her home. And I don’t want to take that away from her. I am still very much a part of her life, I even meet monthly with her therapists and see her every week and we video chat almost every day. But I dont think I belong in a “normal” support group. I think the other moms would look at me with judgement. And not even attempt to understand me. Or the pain that I have been through knowing that ive put her through all of this. That I couldn’t fight my demons before she came into this world and be the mom she needed me to be. But all I know is I need somewhere. Somewhere where I can just talk about whats going on her life and mine and for people to just accept me. Despite my flaws and downfalls. Ill have 6 months sober this month. Believe me I know this isnt a huge feit of success but its a beginning. And all I want is to learn how I can be a better mom to her, how I can be a better support to her. Like I said I don’t know if I belong here, but I just had to try.
Thanks for reading my story-Bri
Bri, 6 months is a HUGE thing! You can’t get to 20+ years without hitting 6 months first, and the first month is harder than all the ones that follow, same with the first 6 months and the first year, etc. Don’t be shameful that it isn’t more, or feel like it’s not enough, because it is enough. My husband has PTSD with suicidal thoughts, and I think he describes the struggle in a great way. Every morning that he wakes up, he has to start his day with the same thought, today isn’t the day I die. It is the same with any addiction. You still have to wake up every day and say, today is not the day I relapse. I am grateful for each day that my husband makes this decision and I know your loved ones are grateful for each day that you do the same!
HI i am the mother of a beautiful 8 year old boy who has autism. we just finally received his official diagnosis just 2 weeks ago but, have been told most of his life that he has autistic tendencies. School has been a difficult road for us. He is in second grade now and just now getting the additional help he needs due to the fact, his diagnosis was delayed.
I am looking for a support group that will listen and perhaps give suggestions, I dont want to fix him, i want to help him live a better and fuller life just the way he is.
My child is an autistic. We have good days that are really good, we have bad days that are really bad. Most common thing said to me “but your child doesn’t ‘look’ autistic.”
I’m struggling to keep it together, and I honestly just need a support group that will ‘get us!’ I am tired of trying to hold my head up high after a crappy call from my child’s school due to behaviors where my child just wants to fit in and does not have the ability to socially do it. My child doesn’t ‘look’ autistic or have NT reactions. I would love to hear from other parents in these situations, hear advice, take suggestions to help us both during the next chapter of our lives.
Are grammas welcome? My grandson has ADHD and a Sensory Processing disorder. He is on the waiting list to be assessed for ASD. My grandson is six and delightful. But he gets overwhelmed easily. He uses words like ‘transluscent’! And he knows what it means! He also uses very foul and threatening language which can be scary. We were asked not to bring him back to church. So I’m reaching out for help and support.