Bridging the Gap Between Autistic Adults and Autism Parents
Sometimes, the internet is toxic. That’s no secret. And that extends everywhere, even in the autism world.
You’d think the community (namely autistic adults and parents of autistic children) would be pretty close-knit, right? After all, we’re all impacted by an issue that requires compassion and understanding from others. And autism can feel extremely isolating, so common ground can feel like hallowed ground.
But unfortunately, we don’t get along as well as we should. Our experiences are too varied, our perspectives are too varied, and often our tempers are too, er, ‘varied’ as well.
I’m extremely happy that, 99.9% of the time, the divide just doesn’t exist in Autistic Not Weird’s Facebook community. [All links open in new windows. Like most people, I prefer my reading uninterrupted!] But because ANW’s followers are so supportive of each other (even in the face of hugely differing experiences and perspectives) I often forget what the wider internet can be like.
Some readers may remember that I’ve mentioned this topic before: that the healthiest thing we can do for autistic people and their families is “please, just stop arguing”. But with that said, the difficulties are bigger than just arguments. I spoke with several other autistic adults after this article’s first draft, and they were keen to point out their other issues with reaching out to non-autistic folk. Some examples included their social anxiety, previous experience of hurt, and lack of emotional energy. For self-preservation purposes, it’s better for some people to keep silent than speak out and risk more damage.
So a couple of important points before we begin:
- This article describes something I did personally that helped to bridge the gap. It is in no way a suggestion for what other autistic adults should do (for reasons I’ve just explained).
- This article also references some autistic adults being dangerously abusive over the internet. Whereas abusive autistic people exist (for the exact reasons that abusive non-autistic people exist), nobody should think that’s the norm. Generally speaking we’re people who just want to be understood and accepted, and we struggle to have our voices heard in a world designed with ‘everyone else’ in mind.
When we try to hurt other advocates
I was never much of a keyboard warrior, even during my younger years. Autism means I struggle with having too much empathy (not the opposite!), so I could never bring myself to spew nasty comments at 200×200-pixel icons whilst knowing there was a real person at the other end – who might see my comment after a day of being bullied at school, or visiting a relative in the hospital. (Not all autistic people are that way of course… but neither are non-autistic people.)
Maybe that’s why I don’t partake in mudslinging matches in the autism community. Because a parent who says something unacceptable to me (e.g. “you don’t understand autism because you’re not like my child”) might be struggling with isolation and prejudice from years of having their child’s needs ignored or disbelieved. Likewise, an autistic person who tells a parent “you don’t understand autism because you’re not the autistic one” may have spent their whole lives fighting through mistreatment and abuse, and be understandably angered at how non-autistic parents dominate the discussion about our experiences.
So if you want a one-sentence reason for all the arguing in the autism community, it’s right here. Too many people have been hurt too much, in too many different ways, and they are still being hurt right now.
Of course, arguing becomes a lot easier when you meet someone who seems to be your ideological opposite.
And with that, I’d like to introduce you to Miriam from FaithMummy.
Miriam is the mother of two 9-year-old autistic twins. She writes about the challenges of autism from a mother’s point of view (and occasionally her daughter writes about her experiences too). She doesn’t hold back about the negative sides of raising her profoundly disabled son, because they’re often overlooked and dismissed.
Unfortunately, some of her posts have not been well-received by some autistic people. With hard-hitting titles like “My children do suffer from autism” and “I don’t want to be an autism parent anymore”, it’s easy to understand why. But this goes beyond mere disagreements: over the last year Miriam has been the subject of many abusive messages, some of whom have been so bad that she’s literally had to call the police.
The internet has decided that Miriam and I are ‘ideological opposites’. Which makes sense, since I have a reputation for being relentlessly positive about autism (which isn’t 100% true – I don’t shy away from the bad stuff), and Miriam has the reputation for talking about the difficulties and challenges.
Nonetheless, we’re actually friends. In fact, two weeks ago I visited her house.
And if you’re an autistic adult advocate, don’t run away yet. Trust me, there’s a good ending.
(And even if you do, at least take a look at Miriam’s own account of the night: Three Lessons an ‘Autism Mum’ Learnt From Meeting an Adult Autistic Advocate.)
Let me tell you a story about autism acceptance.
I spent almost a week in Miriam’s home town, delivering autism-related talks and workshops (yep, I’m a speaker as well as a writer.) One of these talks was to a parent group, and Miriam was unexpectedly in attendance. My talk was about lessons I wish I’d learned growing up with Asperger Syndrome, and to be honest I didn’t think many of those lessons would apply to parents of those with profound learning difficulties.
Turns out I was wrong – Miriam took a lot from it. She and I had a chat at the end, and the next day her family was picking me up outside my hotel. That car journey was the first time I met this boy: her nine-year-old son, Isaac.
I genuinely can’t remember my first impression of Isaac. I’m pretty sure I made an effort not to have one. First impressions are unreliable even with the general population, so it’s better to not be influenced by a disabled child’s mood while he visits a road he’s never been to, at the moment an entirely new person gets in the car.
But he was completely fine, and spent the thirteen-mile journey home looking out of the window at the roads. I was told he would later try to recreate the whole journey using Google Street View – one of his favourite hobbies. Personally I spent the journey having a rest after a full day’s workshop, but kept myself awake for general conversation with the rest of the family.
When we got home and ate, conversation was pleasant. It was mostly about how my last few days had been, as I’d not visited Scotland in fifteen years. (Except when her daughter learned that I was a former teacher with a maths degree, and wanted to talk to me about times tables – multiplication tables if you’re American.)
Before long Isaac left the room, and sat himself on the bottom step to give the iPad his full attention. The rest of us finished our food, and our conversation came to its natural conclusion.
Then I said a sentence that I think changed the evening.
“Do you mind if I go to the stairs and socialise with Isaac?”
Miriam had specifically said she was looking forward to me and Isaac meeting. After a myriad of teachers, psychologists, social workers and other professionals, I don’t think he’d ever met an autistic adult before. And without long before bedtime, I felt it was an opportunity best taken.
I spent the next hour sat on the stairs with Isaac, at first watching videos of lifts (elevators, if you’re American). I’m no enormous fan of them myself, but I’m always interested in watching the passion autistic people show for things. (In Isaac’s case, there was a whole campaign for people to send him lift videos for Christmas!)
From my perspective, all of this was completely normal. I’m an autistic man who works with autistic teenagers. But I noticed his parents’ surprised faces, and every few minutes another photo of the event was taken.
Meanwhile, Isaac switched to Google Street view, and navigated from his house to the motorway. Pretty impressive, but no doubt he’d done it a thousand times before. Maybe literally.
Miriam told me how nice it was to see him happy around me. He often hits people, although out of anxiety rather than malice – he doesn’t yet have other coping strategies for upsetting moments. (I didn’t mind sitting close to him, and clearly neither did he. I’ve spent plenty of time within striking distance of children with disabilities, and you’re less likely to get hit if you’re making an effort to enter their world.)
I looked back at the iPad, and he had navigated to the city centre. Very impressive.
Perhaps the saddest moment of the night was when Miriam quite honestly told me how rare the evening’s events were.
“The sad truth is,” she said, “most adults are scared of him. Including professionals.”
I knew no other reaction than to gaze open-mouthed, then point at him and say “…but he’s awesome.”
“Yes,” Miriam continued, “you and I may know that, but when people don’t want to meet him where he is, or they focus on trying to change him, he doesn’t respond well.”
I’m not sure whether it’s my knowledge of autism (or autistic people), or my experience of working in special education, but I can’t imagine what it’s like to not see an autistic child as awesome. Whether they’re an Aspie who talks for an hour about the same subject (which may be boring to some, but wouldn’t you love to have that intense adoration of an amazing subject?), or whether they’re a child like Isaac who acts and loves and communicates in fascinating ways that don’t even occur to most others.
I looked at the iPad screen, and Isaac had arrived outside my hotel.
He had never been to that street before.
You can throw around phrases like “special needs”, “learning difficulties” or “profound disabilities” as much as you want. But I have never seen a nine-year-old do that.
After that, it was time to start the bedtime routine. Every night Isaac has a baked potato with cheese and baked beans. Even if he doesn’t actually eat it, it’s part of his routine and is essential to keeping him nice and comfortable before he goes to bed. I sat next to him again, talking to Miriam about things and stuff.
Then suddenly, this.
I was aware at the time that this meant something special. But I had no way of knowing just how special. In total I must have had about five forkfuls of cheese. And, as much as I hate cold baked beans, if they’d been on the fork I’d have eaten them on principle.
Hell, I’ve got coeliac disease but I’d have eaten a loaf of bread if it were fed to me by a disabled child who most adults keep their distance from.
Miriam’s response? “I’ve finally found someone I’d be happy to look after my kids.”
The gravity of this statement was not lost on me. I’m not a parent, let alone a parent of children with special needs, but I know enough about the subject to know that parents like Miriam and her husband don’t just get a babysitter.
Ok, it’s a lovely story. But you mentioned bridging the gap between autistic people and parents?
It was time for the kids to go to bed. In a sight that would both warm hearts and confuse Miriam’s most abusive critics, I watched her kids smother her in adoration (and she to them in return) as part of the bedtime routine. With Isaac laughing and his arms wrapped around her neck, I couldn’t help but smile as she said to me – with enormous sarcasm – “well I clearly don’t want to be an autism mum!” It was a reference to the title of an article that led to her receiving enormous abuse from some autistic adults, and her point was obvious: the challenges of raising autistic children don’t dim the beautiful moments, even if it’s the negative articles that get the pageviews.
Due to the evening’s events, bedtime happened more than an hour later than normal. And everyone in the house was completely fine with it. (Except me. I had another three hours of elevator videos in me at least.)
After that, Miriam and I had a chat about blogging. From my perspective it was a casual chat about the main issues, mainly:
- How to write for a community so diverse that it represents over 1% of the world’s population.
- The sorrow of having your most negative material being your most successful. (Despite my positive reputation, my most read article is called Five Ways to Damage Autistic Children Without Even Knowing. It wasn’t my intention, but negativity gets clicks.)
- Her trauma of calling the police because of death threats, from people claiming she hates autistic people even though she married an autistic man.
- How to find common ground in a community where opinions can be so polarised.
- Most of all, how to showcase autistic people’s awesomeness whilst talking accurately about the challenges we face.
And yep, there were things we disagreed about. (They didn’t feel like disagreements – more like discussions – and honestly, those tend to be more productive.) After that we parted, her husband giving me a lift back to the hotel.
The next day, I checked my Facebook and found this.
At first I had no idea how to react. I didn’t go to her house to inspire an apology.
She followed it up a few days later with the article I linked to earlier: Three Lessons an ‘Autism Mum’ Learnt From Meeting an Adult Autistic Advocate. It’s packed full of awesome quotes like:
“It took an autistic adult to show me that someone will one day love my son as much as I do.”
“An Autistic adult entered my children’s world and made me realise how fantastic their world really is.”
“There is a huge chasm in the autism community but sometimes autistic adults and parents of autistic children can actually make for a beautiful friendship indeed.”
Dozens of people sent Miriam abusive messages and even death threats, and ultimately it changed nothing.
One autistic adult watched elevator videos with her son for an hour, and it entirely changed her perspective.
It’s now been two weeks since the visit. And Isaac still makes the 13-mile journey to my hotel on Google Street View, as a way of asking if I can come round again.
I’m not crying. You’re crying.
A word on reconciliation
I’m not going to lie: as I upload this, I’m half-expecting criticism – or even abuse – for ‘talking to the opposition’ or whatever. (Even though every autistic person I’ve talked to so far about this experience has loved hearing about it.)
Do I talk with the opposition? Yes I bloody well do. I’m a liberal who has discussions with Trump supporters rather than unfriend them. I voted remain in the Brexit referendum, and debated my leave-voting friends instead of banishing them from my life. I’m a Christian who socialises with atheists, and discusses my faith with them as a close friend rather than some guy shouting from the other side of a chasm.
In case it’s not clear from this article, I believe that a personalised approach works better than yelling. And if it means eating cheese off a child’s fork after he’s repeatedly licked it, then so be it.
Because at the end of the day, the divide in the autism world shouldn’t exist. It does, of course, and there are understandable reasons why. But the divide’s not going to magically vanish if we argue with each other violently enough. Autism acceptance won’t suddenly be achieved when the 1,000,000th parent blogger has to call the police. And likewise, it won’t happen when the 1,000,000th autistic adult has been told they’re not REALLY autistic, or lives with their experiences belittled by non-autistic people.
It sounds clichéd but, like it or not, we’re in this together. Not every autistic person will have the emotional energy to reach out to parents they disagree with, and that’s fine. Self-care is vitally important (and the same goes for parents too). But for those who feel able to advocate, here’s my opinion.
Being an autism advocate means advocating for the children of ‘Autism Moms’ as well as us adults. Even if you have ideological differences with the children’s parents.
And for parents of autistic children, being an autism advocate means advocating for autistic adults as well as your own kids. Because Isaac and the rest of his generation will be adults one day too.
And, if we get this right, his generation will be able to have it so much better than we do.
So that’s it from me. For those who want to join Autistic Not Weird’s Facebook community, you’re more than welcome. I also make advice videos on YouTube, and because ANW is literally my job, there are rewards and thank-yous available to those who support me via Patreon.
Chris Bonnello / Captain Quirk
Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
Copyright © Chris Bonnello 2015-2018
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