Clashes Between “Autism Parents” & Autistic Adults: How to Mend Fences
By Tiffany “TJ” Joseph, Bened Life Neurodiversity and Disability Consultant
When I first came to the autism community, the only thing I knew was that I was newly diagnosed with autism and my therapist told me to find other people online like me. At the time, I had three kids, with the oldest two having academic and social troubles in school. So instead of trying to avoid the subject, like I did with a previous autism diagnosis, I decided to take my therapist’s advice.
Little did I know what I was in store for by trying to find my people. First, I searched for other adult Autistic people. I found a lot of camaraderie, understanding, and a tremendous ability to start actually learning about myself. Yet, there was an underbelly of a shared enemy. That shared enemy wasn’t society, nor professionals that constantly push out misinformation.
Much to my shock, it was actually parents of Autistic children.
Remember I said my kids were having issues in school? Well, about that same time, I also realized that denying their own Autistic traits and issues would harm them in the long run. See, the idea that they were Autistic had previously been mentioned at many an IEP Meeting (Individualized Education Plan), but my husband at the time and I thought the schools were just trying to label our kids. So, I then started to search as a parent to Autistic children. What I found next blew my mind!
I was confronted with the exact opposite information about autism as I’d found searching for fellow Autistic adults. I found a lot of the information pushed to parents was a narrative of doom and gloom. This was not something I was used to hearing, not because I’m Autistic, but because I grew up with Nonspeaking and speaking Disabled people in my life. Doom and gloom didn’t describe their lives at all.
Not only that, but I found fights between parents and Autistic people when the spaces interacted with each other. That was actually the least shocking thing after I tried navigating autism education online as an Autistic and as a parent.
No wonder the two groups argue online incessantly. They aren’t given anything close to the same information. On top of all of that, there are also influencers on both sides stoking the fires and fanning the flames behind the scenes. The past ten years of my life, I’ve seen these issues up close. I don’t like it. I don’t like feeling as if I’m in the middle of this bickering as an Autistic autism parent. But I do. It’s like I see the points of both sides because I’m living daily on both sides.
What I want to get across most is that arguing is unnecessary. A lot of times, Autistic self-advocates and autism parent groups are asking for the same things just with different words. Other times, we don’t see how both sides’ needs align.
If someone really sits down and looks at what the entire community needs, we will see we want and need the same thing: stable and accessible housing, education, literacy, communication access, and acceptance of our different traits and ways of being.
This is my open letter, from my place in the middle of the argument, to those of you on both sides.
To Everyone: Remember That You Don’t Have the Full Story
The main place where Autistic people and parents of Autistic kids clash is online, either in what they post, or in comments about what someone else has posted. There are endless disagreements about how Autistic people should be treated, what therapies should be used, and what terms are acceptable or not.
For instance, the puzzle piece is generally accepted as a symbol for autism in the parent community. However, it is seen as a symbol of trauma and hate from many Autistic individuals.
Before you respond to someone on the other side in anger or frustration, take a breath and consider this:
Your opinions can change. Is what you feel right now really worth making someone who’s struggling feel bad? You may come across something new that changes your mind in an instant. Wouldn't it feel terrible to have made someone feel “less than” right now, for something you won't even believe is true in a few years, months, or even weeks?
Advocacy isn't about you or your family. If your advocacy currently is about you and your family now, it shouldn't be. Too many advocate for themselves only or their kids only and have fooled themselves into thinking it helps ANYONE but themselves.
If you don't understand other peoples' sides, struggles, and strengths, why should anyone listen to you? If you don't "get it," people will figure out really quickly that you don't know what you're talking about.
Remember that some of the same terms are used differently in the autism parent or Autistic communities. I see so many people arguing about things they don't even realize they agree with each other about. It’s tragic, really; you are fighting each other when we all want the same things and should be fighting for those things TOGETHER.
To Autistic People: How to Be Allies to Autistic Families
Remember that Everyone’s Situation Is Different
Remember that each situation in a family is vastly different from another’s. Important identities like cultural differences and family variances can make taking Autistic advice impossible at the time. Add in hundreds of possible insurance differences and state or local services to their individual decision-making difficulty. Honestly, that makes it easy to understand why people have such hard decisions to make.
And just like with Autistic adults, families also don’t have many options anyway. So everything we say is merely a great recommendation or suggestion but not always practical or even possible for every family (especially if they live in a different country than we do). Look for practical ways that can suit their situation, which might require questions before making a suggestion. It also requires no judgment. Like I just mentioned, people have so many different things to think about in this oftentimes very new and overwhelming world to them. Most importantly, it requires a range of knowledge about people's situations.
Parents Are Learning & Juggling Competing Ideas
Always keep in the back of your head that parents already feel they can't do enough. Remember, they see options they can't afford or can't use for whatever reason. Always remember, they are trying and want the best but have so many voices competing: other families, their own family members, doctors, therapists, teachers, and of course Autistic people. Literally, everyone could be saying different things to them, confusing them and making them worried that they won't choose correctly. You don't want to be just one more critical, non-helpful voice. You want to actually give them advice they can use.
But what makes your advice different from other families they look up to? Or different from the family members they have to deal with daily? Or different from professionals who have gone through years or decades of training and clinical experience? Also, other Autistic people could be telling them different things because we are not monolithic. So how does your advice stand out from even others in the same community?
People in Crisis May Not Use the Right Words
Parents usually only come on social media for help. And often when they are in the middle of a crisis. Most don't come knowing the lingo or proper terminology. And in a crisis, that isn't important to them. Only when their loved one's situation is stable can they worry about the particulars of "language or words matter." If someone is struggling, not only will that type of advocacy be ineffective and wasteful, but it’s also just plain mean to people who are barely making it.
Every Autistic Person Is Different (From You)
Although an Autistic person knows autism, understand that nobody can know someone else's child more than a parent or family member. And it's audacious to suggest otherwise. Only they know the meanings of their child’s stims and sounds. Only the family can know the diet history, what has already been tried, and everything else. For this reason, it's usually only helpful to give advice when asked for it. Usually people have heard everything under the sun before.
To Non-Autistic Parents: Some Advice from the Autistic Side
Communication
We get it: when your loved one can’t communicate for themselves, it is enticing to feel like you will always be the person they need to communicate for them when they can’t. But think from a safety aspect. You can advocate for them for sure. We, as parents, can be our kids’ microphones. But, if they can't communicate their own opinions, then our main priority is ensuring their voice is fully communicated in some form. It's not that they can’t. It’s cruel to assume that. But the only sure thing is, if people are never given access to robust communication, education, and literacy, we will never know what they have to say.
Nobody should ever think they can speak for someone else. Because once you are gone, who will speak for them then? Once you are gone, do they have the ability to make sure others aren't abusing them? Only their own voice can do that.
First-hand vs. Second-hand Experience of Autism
Understand that although you know your child more than anyone else in this community, you don't know what it is like to be Autistic. You don’t know what it’s like to have impulses some days based solely on an ever-changing and unstable sensory environment, and to constantly interact with parents and the public at-large who think they understand through second-hand experience, only to make it obvious they have no clue what it's like from the inside with their actions and words.
New to Autism vs. Years of Community Experience
Realize that many of our experiences are not just our own; we don't exist in a vacuum. Those especially with many years online with fellow Autistic people or in the same classrooms growing up. We trade stories and are constantly sharing good and bad experiences. We share tips, tricks, and strategies for making it through the world that non-autistic people are not privy to.
While you may be learning about autism from articles, the medical and therapeutic establishments, and other parents... We have Autistic parents and professionals to learn from as well as other Autistic people. Thus we GENERALLY have a more well-rounded view of things in this community than the parent community, and our frustration lies in the fact that we are treated as if we can't possibly understand what any parent is going through.
The Autistic adult responding to you understands the situations and struggles involved in caring for, or being, an Autistic child – don't assume they don’t get it. Nor that they are gaslighting you. Those of us with experience are used to things that are new to you, and that might seem outrageous to you now.Your issues that sound unrelatable to other people in your life are oftentimes very relatable to Autistic adults, whether or not we have our own children. Just because we don't react like you expect...take the non-reaction as experience, not gaslighting or not caring.
Where Autistic Adults Generally Draw the Line
Keep in mind that there are some things that are and should be non-starters for the Autistic adult community. Expect a strong response from Autistic adults on topics including but not limited to:
- Assuming your loved one or any Autistic or Disabled person doesn't understand or doesn't have intelligence. Why should we stand by and let you insult someone? That's a fast nope! I don't care if it's your child and you swear you know they aren't capable of deep thinking or this or that... Not everyone will disengage nor disagree, but please realize that nobody owes you a good reaction when you are saying something heinous about one of us.
- Valuing speech over other forms of communication. Speech is not better, nor should it be given over-importance when robust communication is the absolute goal, with every form of communication equal. Having access to speech and other forms of communication is helpful. The more the merrier, in fact.
- Thinking of disability as always negative. Parents should realize that the way they interpret experiences or situations may be drastically different from the way an Autistic person, including your own child, experiences it for themselves. And just because you went through it with your child, they may not see the same situation as negative or proof of how terrible their disability is. You need to leave room for the idea that your child likes themselves, including their disability. Your interpretation of events may be the complete opposite of your child’s. Autistic people may be reminding you of that, even if it feels like gaslighting.
- Assuming your child hates their disability. Remember, your kid may not be as upset about things as you are. That's a common parent/child scenario, not a reason to assume an Autistic person doesn't understand your plight or struggle.
- Believing you know something about someone you don’t know. Remember, you cannot tell via internet or social media if an Autistic person is Nonspeaking or lives at home or alone. You cannot assume who has a job or not. You can't tell if someone lives in a residential facility, has caregivers, or has their own Nonspeaking Autistic children. You can't assume because an Autistic person is online that they don't share experiences you do or haven’t in the past.
Mending Fences Takes Listening, On Both Sides
As I mentioned before, the greater autism community of parents, caregivers, and Autistic people wants and needs the same things. We first have to learn how to listen and really hear each other.
We all have pain and hurt informing how we connect with each other online and in-person. Before we respond to each other, it makes sense to be curious about why the person has that opinion. That curiosity gives us an opportunity to not only learn about a person, but also more about autism and this community. The more knowledge we have, the better our real advocacy becomes for all.
About the Author
Tiffany "TJ" Joseph is an Autistic adult working in accessible education with teen and young adult Autistic non-speakers. TJ is also the mother of three Neurodivergent children. She herself is Hard of Hearing and utilizes many ways to communicate including ASL, mouth words, and high-tech AAC (augmentative and alternative communication). Their passion in the disability space is communication and education rights for people of all disabilities. Find TJ on social media at Nigh Functioning Autism.
Recommended reading:
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