Editor’s note: Heather is neurodivergent but not autistic; however, she is a fierce ally to autistics and a part of The Aspergian 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 The Aspergian).
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 socialisation, 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.
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 inflicted 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 impact of treating children the way they were treated.
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.