Editor’s note: Heather is neurodivergent but not autistic; however, she is a fierce ally to autistics and a part of the NeuroClastic team.
I’ve just read a third recently-released article written by parents of autistic children feeling hurt and saddened by what they were either “victims” of or how they were viewed on social media.
The articles are written by well-meaning parents expressing something that happened in their life, where they are simply ranting or asking for advice regarding their autistic child.
Instead of getting the anticipated support, some Autistic adults jump on their post, accusing them of being bad parents, doing something wrong, or simply appearing nasty. These people focus too much on the wording of the post rather than the intended objective.
The parent is disillusioned, saddened by the hate, and determined never to engage in that group again. It’s a common scenario which has helped no one.
Parents can be confused, anxious, and worried about their child. Life may be tough with sleep deprivation and a misunderstanding of certain behaviours. Their child may have been diagnosed non-verbal, with learning difficulties, co-morbids, and varying behavioural issues.
They may have been told their child has severe, profound, or low-functioning autism. The last thing they needed was to feel judged.
From My Perspective
I firmly believe, and always will do, that the lived experience of being autistic is the most educational and beneficial way for parents to find ways to help their children.
Learning about sensory issues, communication differences, anxiety issues, social differences, and related co-morbid conditions is essential. With this kind of knowledge your child has the best way of thriving to their best ability and can assist family life tremendously.
Yes, no two Autistic people are the same, but similar traits can help unearth meanings to behaviours, problems, and issues which can help and support families as a whole.
So why are Autistic Adults so ANGRY & MEAN??
I will try and explain this the best way I can. Your kids are the lucky ones.
Yes, you have read that right, they have come at at time when you have endless guidance at your finger tips through social media and the internet (with sites like NeuroClastic).
Sensory issues are mostly acknowledged and understood or can be learned about. Access to alternative communication required, like an AAC device, can be found. The opportunity is there for you to learn. No, you didn’t anticipate this. Yes, it is daunting. But it can be done.
For the autistic adults communicating with you online, such wasn’t the case for them as children.
Try to imagine a world where no one understands you. Sensory issues were probably seen as stubborn behaviour. Social differences made someone a ‘freak.’ Co-morbids such as dyslexia made you “thick” or “slow.” Being non-speaking meant someone had no intelligence. Motor difficulties were classed as laziness or a judgement on your intelligence.
They were misdiagnosed as schizophrenic, or that horrible word, “retarded.” A lack of eye contact made you ignorant or devious, and it was forced on people who found it painful.
That was the reality for many autistics not diagnosed until they were adults.
As more knowledge about what it meant to be autistic grew in the early-to-mid 2000s, more and more children were diagnosed. Awareness campaigns cropped everywhere, though there was still little acknowledgement of sensory issues, communication variations, and social differences.
The focus, for the longest time, was on trying to “fix” those differences. Forced eye contact, forced socialization, and an increase in Applied Behaviour Analysis (ABA) became the norm. Neurodiversity still stands against ABA in its modern form, but in those days it was horrendous beyond belief.
Many autistics are in jail, many mentally ill, many we have lost to suicide. It’s no easy ride being Autistic.
Enter Neurodiversity
Neurodiversity was coined in 1998 by Judy Singer. It marked a new way of thinking about autism and a new connection for autistic people. The proliferation of social media was an essential platform for many autistics– an opportunity, at last, for a community to create what they see as important, in their own voices, instead of constantly being spoken over by professionals and non-autistic parents.
The debunked and infamous Wakefield journal published in 1998 threatened to slow the momentum of Singer’s neurodiversity paradigm. He claimed that autism was the result of a vaccine injury. In fact, it continues to cause further setbacks as anti-vaccine myths claim many vulnerable individuals; nonetheless, the battle to be recognized as fully human continued.
Language: Person-First v/s Identity-First Language & Function Labels
People decided they didn’t have autism, they were autistic.
A primary source of conflict between autistics and non-autistics was the use of function labels (high-functioning, low-functioning, severe, mild, etc.). It was realized they were a useless, inaccurate, and harmful tool to describe autistic people.
When the people who were considered to be “low-functioning” found different communication avenues like AAC devices, they were realized to be intelligent. Branded “high-functioning” autistics were struggling with day-to-day life, and the labels indicated that their very real hardships were “mild.”
It’s important to note, though, that some autistic people prefer person-first language. The wants of the individual should be respected.
The parent-led awareness campaigns often portrayed a tragedy-type narrative, exploiting autistics for profit, when autistics worldwide were desperately seeking awareness and self-acceptance.
That fight still continues.
A Collective Effort
Once the autistic community was able to gather and compare notes, they were able to clarify and define sources of information where non-autistics had failed to accurately describe what it meant to be autistic. For example, cure-type talk devalued autistics.
In the blogs I mentioned above, complaints were being made that somehow “high-functioning” autistics are stopping services from being created for people with higher support needs.
I am unsure where this is coming from, but I can only see two types of services this might affect. The first being “Autism Treatment” organisations, many of which were created on the back of Wakefield’s false vaccine connection.
These organizations need to be disbanded as they are rife with false information, funneling money to the wrong channels, and dangerous. For REAL research into autism, looking for a “cure” or the cause (which is just a sneaky way to look for a cure) is a poor allocation of resources.
Research needs to focus on assisting with co-morbid conditions, empowering physicians with more information about treating autistic patients, and therapies to improve the quality of life for austitics would be a more valuable, less-ableist division of resources for helping autistic people and their families.
Applied Behavior Analysis (ABA)
The second , you’ve guess it, is ABA. When you gather thousands of people together discussing the harm ABA has done to them, its simply no wonder they want this form of therapy stopped.
One thing you need to remember, that Autistic “screaming” at you to change your wording on a post may have been subjected to 40-hours-a-week ABA on them as a child… or they see it as an extension of the style of non-autistic parents who didn’t know their children were autistic and tried to aggressively change their children’s natural autistic traits.
The PTSD they will now have bears thinking about. If you don’t want your child to be this angry later, don’t do it, stop it, or at least read the article at the bottom of this thread to make sure your child’s ABA is not harming them.
The false information given in these blogs that “high functioning” Autistics are taking away support from “low functioning” Autistics, is tragic. Please read the “golden connection” at the end of this blog to see the amazing work Autistics are doing for all Autistics worldwide.
Finding Support by Being Supportive
So how can you get the support you and your family need on social media to help your child?
The answer is by seeking the guidance of autistic adults, but that means respecting the journey it took for them to be where they are and the work they’ve put in to better their understanding of what it means to be autistic inside and outside of their own experience.
To do this is really quite simple, think about your wording.
Instead of, “I hate Autism,” how about “Help. We are struggling.” Instead of “her meltdowns are ruining our lives,” how about, “How can we support her through meltdowns?”
Instead of, “Autism causes me to be depressed,” how about, “How can I seek help with self care?” You have to remember the moment you post about your child, an autistic person won’t see things from your perspective, but from your child’s.
As, yes, they were like your child as kids. Just rethink, think about their history, their struggles, and their determination that history isn’t repeated.
Is it right that these “loud-mouthed autistics” can be rude and blunt, often as a result of being triggered by events in their own lives or driven by a passion to support their fellow autistics?
Well, as a non-autistic myself, I’ve had to learn that “blunt” isn’t usually intended to be rude. I’ve had to learn that their passion is from a deep, genuine, caring place that realizes the negative impact of treating children the way they were treated as children.
They know the statistics on autistic early death rates, and many have lost friends already to suicide. A recent study of recently-diagnosed adults in the UK revealed that more than 1/3 had attempted suicide. Autistics want a better life for your child.
Please, please, try not to be offended. Learn from it and move forward. Give them space to be passionate. Realize that they are putting in work to help you. Realize that one day, your child may be a part of this community and treat them the way you hope someone would treat your child.
Realize that many of them were believed to be unintelligent an incapable of making decisions and expressing themselves at one point in their lives. Many of them are non-speaking.
Realize that they fight for people with intellectual disability and who can’t communicate with words. Realize that not every autistic person is an advocate, but many of the people with whom you’re interacting online are people who spend their whole lives studying and learning how to help autistic children– and autistic people word hard and focus fully on what’s important to them.
Realize that if you have a bad experience in one group, or with one or two autistic people, that is not a representation of autistic advocates.
Realize how powerful validation and support from neurotypical parents is to people who have not felt enough support, who haven’t been listened to, and who have been mistreated. Realize they badly want to help you and your child.
Autistic people who are passionate are not creating a divide. That divide exists already, but you have not had to feel its impact yet. The feeling you have that they are creating a divide is your emotional reaction to realizing a divide exists that autistic people were powerless to stop.
Think of the positivity. These autistics are your children’s allies. They will fight for your kids to get the correct therapy, give them the confidence to be proud of who they are. Given the opportunity, they can fight for safety in group homes by insisting on your adult child being treated as a whole human being, not just a service user to be abused when you are gone.
They are fighting for better schooling, too, and safe respite if needed. Many of them are parents of autistic kids, as well. Imagine a world where an autistic can openly state they are autistic without prejudice or judgement.
Imagine a world where a job interview will result in a, “What can we do to accommodate you?” rather than a closed door.
That is the future of Neurodiversity. Be on the right side of history.
Editor’s note: In case it wasn’t apparent, “mean” and “rude” were intended to demonstrate, ironically, the short-sighted perspective of those who misinterpret autistic passion, direct speech, and justified anger as a personal attack.
Useful links:
How Autistic Adults Have Helped Me: A guide to finding support online
How to Tell if an ABA Therapy is Harmful
The Golden Link: Uniting the Spectrum
- Autism “Intelligence” Tests Send Mixed Messages to Parents - August 9, 2020
- Free Communication Resources for Autistic Children - February 1, 2020
- How to Spot a Good– or Bad– Therapist for Your Autistic Child - August 31, 2019
23 Responses
This is a wonderful article! I am a “safe autistic” for neurotypical parents who want to learn from my experiences now that I’m an autistic adult. Certain wording does trigger me and irritate me, and when that’s the case, I just pass it by instead of responding (otherwise I would respond with anger), but if a parent wants to come to me to ask questions about their child’s behavior, I’ll do the absolute best I can to support them. I do have PTSD, but I’ve been through years of DBT (dialectical behavioral therapy), and it’s done wonders for me in helping me understand the viewpoints of others, and that not every negative thing that comes from someone is a direct and purposeful slight against me. Yes, we ARE trying to help your children. We want to so much, because we do not want to see what happened to us happen to them. Speaking only for myself, if I can prevent the horror and confusion of being called “attention-seeking” and “dramatic” and “rude”, and all that, all of my suffering will have actually been worth it.
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Epic ! 😊 Thank You to a kind and experienced ally! 🎸 it is crucial Autistic adult voices are listened to, understood, and respected more, if things are going to change much, in a world still so unreasonably and upsettingly against Autistickind in various ways. 💚 SHARING THIS POST.
“I’m just a soul whose intentions are good. Oh lord, please don’t let me be misunderstood” – The Animals
Thank you ❤
Thank you for the article; you have articulated many of my own thoughts and conclusions on the subject. Frankly I do not give a crap when my advocacy for sanity and fairness “offends” someone. William Shatner advocated Electroconvulsive therapy for autistic kids after the Autism Speaks ™ cult told him there are three “science papers” on the subject; when I informed Shatner that the “papers” he listed are not science papers, and that ECT is counter-indicative for 99.99% of autism behavior, Shatner became patronizing, sarcastic, and called me “my friend.” Some of Shatner’s cultists were outraged that I had corrected him.
Appalling behaviour from him 😡
Shatner is an appalling person according to many of the actors that have worked for him. There is a REASON that Leonard Nimoy CUT OFF ALL CONTACT with him in the last years of his life.
Thank you for writing this article. The best thing I ever did for my autistic son was to listen to autistic adults.
I couldn’t help but laugh a bit at this article. This part highlighted my point: “These people focus too much on the wording of the post rather than the intended objective.” So, the NTs are upset that the autistic people are responding to what the NTs wrote, not what they meant. They’re upset that the autistic people are behaving, well, autistically. LOL I wonder how many see the irony 🤣
I think allistics do this to each other too!
They misinterpret a lot of each other’s communication and have strong emotional reactions, the other person reacts back, relationships get messed up. It’s not just allistic-autistic communication that is messed up by not saying what you mean! Being ok with working to correct misconceptions is also a good skill for anyone.
Lots of therapists have great job security because folks need to learn that saying what you mean is in fact a decent idea.
The National Council on Severe Autism would likely disagree with this entire article. They are a growing group lead by a small well known group of women who despise the neurodiversity stance and believe their poor sad “low functioning” children are ignored. Parental pity party year round…..
Yes they are horrible
So, do they think that their Autistic Children™ WON’T grow up into autistic adults? Why can’t they listen to those of us who’ve made the trip already and know where the best “truck stops” are?
Great article with some awesome strategies to put into place. Although, I have to say that some Autistic advocates have taken things a bit too far and have gone into people’s profiles and stalked them, bullied other adult autistics for having a different opinion to them (witnessed this with my own eyes and the victim ended up in hospital the next day) and more than on one occasion ‘gang up’ on a parent. This needs to be addressed on both sides.
Maybe they’re afraid that if they don’t stalk and bully then they’ll be too normal for their autistic pride?
I believe that a further point could/should have been made about the differences in use of language between Autistic and Neurotypical people.
The author says about Autistics responding to posts by NTs, “These people focus too much on the wording of the post rather than the intended objective.” See, here’s the deal – Neurotypicals often use euphemisms and beat around the bush in order to not say what they mean. Now, if you check with the “experts” they will tell you that Autistics do not have ‘Theory of Mind’, meaning that we cannot figure out what is going on in the mind of NTs, so we do not pick up on the euphemisms and bush beatings and the only thing we have to go by is what was actually written or spoken. NTs also have a tendency to hear or read what has not been said or written. Now, it you check with the “experts” they will NOT tell you that NTs do not have ‘Theory of Mind’ even though they cannot figure out what is going on in the mind of Autistics. Because all these “experts” are Neurotypical themselves, and they’re not going to talk dirt about their own kind.
So are Autistics blunt, mean and hurtful? It depends on your point of view. If you see speaking simple truths without prevarication as being blunt, mean and hurtful, then I suppose we are. Does it mean that we are angry because we don’t sugarcoat everything we say, and don’t say things in ways that may or may not mean what we mean? Probably not; if we’re angry at you, chances are you won’t have to wonder about it.
What we’re aiming for is efficient and effective communication. In our view, that is best accomplished by telling the truth in as simple a manner possible, without subtext. So please, listen to what we say, not what you suppose we would mean if we were like you.
It drives me nuts people seeing and hearing things unsaid/unwritten, I actually thought the people doing this were seriously ‘disordered’. Then I learn that I am the one with the ‘disorder’ and seeing and hearing things not there is ‘normal’ … who knew! 😉 I personally would not trade honesty and transparency over presumed ‘mind reading skills’ everyday.
Well said.
I started learning about autism as an ally in the early 2000’s. My younger son was diagnosed in 2012. We’ve then worked backwards and realized that all members of our household met the criteria for a diagnosis as children. (It greatly simplifies marital communications to realize we both communicate on the same principles – say what you mean clearly and directly, ask for clarification if unclear, and under no circumstances bother with hints)
So yes, of course we’re blunt, and people who don’t operate this way think blunt is rude, and people who think you’ve been rude have their feelings hurt. It’s much easier when both parties operate on the same channel, and if I don’t know someone is on the autistic channel, I will say, “this may seem blunt or rude, but it’s not my intention to give offense. It’s my intention to make sure I clearly communicate what I’m thinking.” Most people seem able to accept these disclaimers, but it might not work for everyone — certainly, asking someone who suffers from PTSD to disclaim every potentially offensive communication puts an additional burden on someone who is already carrying so much.
Thank you. I’m an autistic adult in my 40s and I am angry. I am angry because I have been bullied, neglected, and preyed on whole life even by relatives. I’ve had to use every ounce of energy to learn how to blend in over the years and create a life where I can work. I don’t even want to talk about school. I will say that what I have been through not only has gotten dismissed as “My problem” by family, doctors, etc….but if they had to live my life they wouldn’t have survived even a week I’m guessing. It is really really really hard. My first suicide attempt was at age 13. 13!!!!!!!!!!!! I almost made it though. I didn’t want to die…i just wanted relief. In talking with other autistic they have had very similar stories. My age group didn’t really have any reprieve at all. It doesn’t end either. I am now 45 and have hit an autistic Burn out harder than any ever before. I’ve recently been diagnosed with ptsd and agoraphobia due to all the past trauma. I’m fighting for disability and have been declined. It is very hard to fight when you are this burned out. It’s hard to meet your own basic needs when you are this burned out. Other autistics who have spent their lives with one foot in the NT world and all blame upon themselves, know exactly what im speaking of. It’s basically being stuck in a place where you cannot regulate any of your emotions anymore, even the “autistic traits” you worked so hard to get out of you come back at full force. Basically, you grab on to anything to help you survive. This is the first article EVER written by an NT that has brought me to tears. An autistic friend of mine and I often talk about how new words need to be created because there are no current words that can explain the severity of the emotions and feelings and anxiety we feel. Reading this article…..the bottom part made me feel heard. I never feel heard with NTs. I feel attacked and shamed. When you said the line about a parent saying her meltdowns are… My anger fueled sky high. I remember my younger brother telling me I ruined our family. I remembered him telling me that because of me he couldn’t get anything for him because I had to be put in institutions or homes. The sad part is that I never would’ve had police called or been put away if my father hadn’t kept trying to restrain me during meltdowns. The restraints led me to flee which resulted in outside sources becoming involved. Then I read what you said about triggering and was like “holy shit” this lady gets It! She actually understands. I read your article to my husband and at the same point broke into tears. It’s so overwhelming to have an NT understand you. I could swear from reading that section that you had to be autistic. Here’s the thing. I was that kid who didn’t talk until late, I banged my head, I rocked (still do alone or with my husband), I threw stuff, and the list goes on. I had to teach myself the rules of this confusing world. That didn’t always go well either as I had to rely upon watching others and dramatic television shows like 90210. You can I’m sure understand how that in itself caused problems because I thought it was how real life was supposed to be. I was alone, fighting this battle. I also know somethings about myself back then that no one cared to look at. I never wanted to have meltdowns, I was loyal, I was honest and never wanted any person or animal to be harmed. However, that is not how the world viewed me. The only person who got me was my mother, who died at 59 (the average life span of an autistic). Looking back she was also autistic. She married a man who she believed would take care of her but in many ways he treated her like an insolent child. All of her meltdowns were when he wasn’t around and when she would try to help me out of discomfort he would yell at her that she was the problem…i was spoiled and attention seeking. My NT daughter says the very SAME things to me about my autistic child, she just doesn’t get it. So here I am trying to make it to my 59th birthday by slowing things down and getting regulated. I’m scared. I’m scared we are going to lose our home. I have no health insurance and no help to get out of this Burn out (which is a very real thing but not acknowledged by most professionals). I’ve written my job for assistance and been ignored so I just don’t work. I’ve applied for help and been denied. This is MY reality. What these parents often don’t understand is that whether their child is verbal or nonverbal….they will still be autistic as adults and this is what the world has in store for any of them who are “high level” functioning enough that services will be denied. It could be their child. I want to restate that many people thought I would never be able to hold a job when I grew up. With all the help that’s being given to children who are considered “lower functioning” then I am now, they could end up in the same situation as me. Whenever I try and find help for adults it’s all about the kids. Am I angry at this???? Not at all!!!!!!!!!!!! But autism doesn’t end in childhood. So we are out there hurting, fighting, begging for help that doesn’t exist. Their children may have to do the same unless we can make the change so their children won’t need to face this. Childhood was the easy part. I say this with certainty and sadness. In childhood you dont have the added responsibilities that the world throws on you on top of living in a world not created for you. I have 2 autistic children myself and i fear so much for their future that it hurts. Unfortunately they qualify for no school assistance because of their high grades. No one sees the inside struggle at home, they only see the face they put on in public. Fortunately, having an autistic mother, they were taught this early on…..kind of like homemade aba therapy. Thus they were able to avoid many situations i had to deal with growing up. My husband and my eldest fought horribly and her behaviors worsened until she received her diagnosis. Then he dove in full fledged and their relationship made a 180. They have a very special bond. My husband now teaches aba and it is so natural for him because he lived it. We’ve been able to create a semi autistic friendly home. Granted we still have issues because we are a mixed family and while we have to adapt NT behaviors outside of our home and deal with the frustrations outside the home, it is difficult for NT siblings to understand the frustration from that which often lends to meltdowns and general discomfort from high anxiety levels. But we make it work. But what about when they leave home? What then? Seriously, i fear either of my daughter’s experiencing Burn out and finding no help like I do. I don’t get it. I’ve worked, I need a little bit of help to regulate so I can get out and do it again. They give disability to people who have never worked but can’t give us help to get over a hump? I know I’m not alone. I’ve spoken with many autistic in my age range and we are in the same boat. Our biggest fears are homelessness, getting sick with no insurance, or having to re enter the work place without our emotions regulated. Doing so could ruin our lives because we don’t have the same endurance to pretend to be NT when we are not regulated….and isn’t this what the world expects from us and desires from us? Of course we are angry! So why aren’t these parents fighting with us instead of against what they “can’t deal with” at the moment with their children? They should be angry too because of what lies ahead for their kid. Thank you so much for writing this. It gives me hope that there are NTs out there besides my husband who try to get it. The fight isn’t about meltdowns or sleepless nights, or high anxiety. It is for a life worth living. We autistics will always deal with the issues they complain about. We can help them create a more appropriate environment for their child. We know how to do that. However, they won’t always be around, or maybe they will…..most of us may die before them. We need to be fighting for a world that gives us purpose and strength and a place. In my groups I’ve met so many wonderful, kind, honest, loyal autistics that have so much to give the world. I have so much I can give……..but I’m not sure I’ll live long enough to do so.
Thank you so much for your reply and your insight Julie. I am glad this article has helped a bit. I really hope things get easier for you and your family soon x
Actual autistic here with autistic kids. Having left numerous ‘autism parenting’ groups because of the consistent catty, cliquey, pity-party, WOE IS ME AUTISM IS RUINING MY LIFE theme, I have to say THANK YOU for writing this. I now only join groups for parents who are actually autistic or neurodiversity allies, and I also run one myself specifically for autistic/nd mothers. My life is so much less stressful now that I don’t have to argue every day about the trauma these people are inflicting on their children – and I would know as I have c-ptsd from my own childhood, having not been diagnosed until 41.
I wish that other parents could find these articles first. I spent so much processing time researching and discarding before stumbling upon responsible and real information.
I’m leaving a comment here to all to bump up the post but also to offer thanks to all who shared their story as a comment.
Surely we automatically belong to all these groups?