Autistic Adults are widespread on social media
The best way to find them on twitter, is through #AskingAutistics
We have many links through facebook
Autistic Allies facebook community
All these facebook pages and groups:
Informative and supportive pages and groups on facebook
And a couple more great links:
The Thinking Person's guide to Autism Resources
The Autistic Advocate - A safe place for parents
Below is a whole list of testimonials from a variety of facebook groups by parents who have benefitted hugely from having Autistic friends and mentors who have helped change their whole perception of Autism and been a huge advantage to their family life.
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I saw your post and wanted to tell you how much agony auties vlogs have helped me as a mom. I have always taken a child led approach to being a mom and me and my son have always had a very close, happy relationship. The problems arose when my son started school and wasn't met with as much understanding of his different needs and was seen as a spoilt child. I couldn't properly put into words to advocate well enough for him and it was so hard seeing him struggle and them fail to get him. Then I found agony autie and while I had been feeling so down and worrying so much about him and how hard his life would be with no one understanding him like I do, she helped me see autism in a whole new light. By lighenting my concerns for his future it helped me get strong enough mentally to better advocate for him. Also her amazingly accurate and simply put easy to follow engaging videos are the perfect things to be sending on to his school. I think videos explaining autism are a fantastic way of getting the word out and helping these kids. They are easy to share and catchy and quick to watch so can be sent on to the most reluctant of educators or family members. His school is finally listening to me and he is getting on fantastically this year and is so much happier. One thing I loved about finding autistic allies was how messed up I thought aba was and was so delighted to see all you guys shared that view so I kind of felt validated in hating it.
There is nowhere else I would turn to now other than autistics for helping me out with any questions regarding his autism.
Thank you all and especially agony autie for helping me see the beauty in autism again. I always saw his special ways as beautiful as a young child but got caught up in the system for a short while and consumed by worry for him and now you guys got me back on track
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Keep fighting the good fight
Mel
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I am a support staff person. Though I have a sharp instinct (due to life experience) regarding non-verbal communication as well as many other aspects of my work and those I serve, I find it invaluable to have this group to talk to.
I have often asked questions of the group that help me gain a deeper or more well-rounded perspective of the many facets of nuerodiversity. This translates into probiding better service to the people I assist as well as their families. It also helps me to educate member of the NT community in a more accurate and acceptable way.
As I read posts it truly does help me become more sensitive to the needs of others.
In addition, though assumed "NT" I have even more reason than before joining this group, to question if I truly am on the spectrum and have just slid under the radar all these years.....
If you would like anymore detail please ask....
I hope this is helpful
Chris
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I’ve learned everything from autistic adults. From learning what autism really is to understanding I’m autistic to learning new ways of helping my children. - Bob
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Autistic adult support groups gave me a totally different perspective vs relying on the autism parent support group. Parent support groups are pro ABA. Actual Autistic adult groups helped me realize ABA is actually harmful and it's best to let my son grow at his rate.
Yanira
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Agony Autie really helped me through her blog to understand what a meltdown feels like. My son was diagnosed in March he’s 12 . It was my first real insight into how he feels when he has one. Donna
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I have really valued these social media groups for allowing me opportunities to discuss autism with autistic people of all age ranges, all over the world. These individuals have provided valuable insight into the "autistic experience," which I have found helpful in so many ways. For one, when my son (who is now 5) was diagnosed a year ago, I was fed all this info and given all these bits of advice from neurotypical people who were supposedly experts in autism and who wanted to provide resources that our family could use. I was this close to using the 3-letter acronym we all know and hate to "help" my son, when I had the good fortune to come across autistic people discussing their own personal experiences and anecdotes regarding said acronymic "therapy." I told the people offering the 3-letter acronym "nooooo thank you!" and have been learning and trying to understand--and help--ever since. Many so-called "autism parents" and even medical professionals would consider me "neglectful" because of my refusal to impose this 3-letter acronym onto my son in an effort to make him "indistinguishable from neurotypical peers," but I refuse to cause harm to my children so that other people in society may feel more comfortable in their presence. Without autistic people talking to me and sharing their experiences with me, I may well have ended up going down the proverbial road to hell that is paved with good intentions. Every single day, I am grateful to these people for sharing with me, and I hope that the insight they have provided will make me a better parent and a better person.
Sorry to go on and on. :) I'm...verbose. LOL
Tamara
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I have learned that "bad behavior" always stems from a need that isnt being met.
I have learned that patience and unconditional love are the most valuable resources.
I have learned that EVERY child has feelings and thoughts of their own, even if they can't communicate at all to anyone else. They should never be talked about as if they aren't there just because they can't speak.
I have learned that my child has been an individual since birth. It is not my job to tell him who he should be, it's my job to help him learn to be the best version of himself.
It is not my job to make him fit in and act like everyone else. It is my job to help him learn to be a person he is proud of.
Brandi
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I’ve learned to be an ally who promotes the neurodiversity paradigm and advocate for my neurodivergent children and the adults working so hard to make their world better.
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I’ve been taught to listen to the voices that truly know what it’s like to be autistic. I’ve learned to let my children just be and develop in their own unique ways.
Louise
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Autistic adults have been my #1 source for understanding and parenting my autistic child. They have been so much more helpful than any professional or expert or therapist. I now have a better understanding of my child’s internal experience & how he may experience the world. I really don’t know where we’d be as a family without the knowledge I’ve gained from autistic people. Just thinking about it makes me teary-eyed. I am so grateful.
Sorry it’s short. Writing, or even thinking about having to write something, makes me anxious! If I had time to sit down and think, I could write a freakin novel with details of what autistic adults have helped me with.
Kelly Jo
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I wrote all about it in my blog When you actually know Autistics Jessica
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“...we have different memories as autistics, we process liberties and invasions and assaults a different way, we often remember deeper, longer, and cannot let go or move on.”
I’m autistic and my whole life I had wondered why I couldn’t process the trauma inflicted on me by others. I thought I was just a broken person. Then my autistic son experienced trauma and I reached out to other autistic adults to understand what could be going through his thoughts. I read this portion of a comment from another autistic adult and I understood. I understood my son and myself.
I had spent a lifetime trying to understand why I needed to relive the trauma in my thoughts and now I was spending sleepless nights trying to understand why my son was doing it. The answer was in the insight of an autistic man traumatized by life events.
This one man helped me to help my son. It forced me to see that this would be a process that could take a lifetime. It will take patience to understand and unravel the behaviors attached to it. It will take time.
I’ve thanked this man many times for his insight but I don’t think he’ll ever truly understand what those words meant to me. They were a door for me, my son and other traumatized autistics to walk through. They were acknowledgment and acceptance.
Suzy
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When our son was going through the diagnosis process Facebook wasn't really a thing for groups like it is today. But I was familiar with blogs and followed several, through the craft blogs I discovered a parenting blog written by the father of a boy a couple of years ahead of us. My husband and I read every post he wrote and followed their journey. As parenting blogs go, it was actually a good one, he took it down when his son reached an age where he felt uncomfortable talking about him online.
One day, someone left a comment about "ANOTHER parenting blog, why don't you listen to the autistic people themselves?"
So I hopped over to their blog and went down the rabbit hole of actually autistic blogs! Those blogs led to Facebook and the groups I now belong to.
What I've learned is that while local parents can offer valuable information about education, benefits, clubs and activities as well as meet-ups (those meet-ups were amazing, and so supportive) there really is nothing quite like the first-hand experience from the adult autistic community who have that lived experience.
It's important that both groups work together and listen to each other. A parent advocate can only be stronger if they have the back-up of the autistic community. We have no way of knowing if we're doing the right thing, having an adult say "I wish my parents had done that" is invaluable and empowering. It gives me the confidence to say "No, we won't be working on eye contact" or "AAC is the way forward".
This is one of the posts I read that really stands out in my memory and I've referenced it many times since. Meltdowns vs Tantrums
Josy
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How Autistic Adults Helped Me And My Child
Our family was at breaking point. I realised that the things the “experts” were telling me to do were disconnecting me from my child. I had no idea what to do and I felt very alone and afraid for my child.
I met several fantastic Autistic adults online. They guided me, supported me and even answered my questions- which I now know would have been based on an offensive premise; yet I was offered kindness and insight in return.
I began making serious changes in my approach and my parenting style, based upon their guidance. The impact was incredible and I began to feel a reconnection with my child, which is a testament to my child’s beautiful soul and kind nature.
I began focusing on acceptance of who my child is, respecting their way of processing and experiencing the world and advocating for their needs to be met.
I met more Autistic adults and they nurtured me in my new understanding and encouraged me in my parenting.
In them, I found people who genuinely cared about the wellbeing of my child, rather than focusing on me. Everything they said was to benefit my child, which also benefited our family life once I made the necessary changes.
This was now five years ago. The support and guidance I received continues to drive my mindset and my parenting toolkit. My child is happy and enjoying their life, their relationships and their school. My relationship with my child has been repaired and it gives me so much happiness.
I don’t know where we would be without the Autistic adults I met, I don’t dare think about it, and I truly hope they know who they are and how much they helped us.
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