I attended a conference last year as an expert speaker. As is often the case, I was quite unwell with mental health issues. My illness always seems to take a slightly different form and on this occasion I was not depressed or confused but I was just ever so slightly more vulnerable than I usually am. I will contrast two responses to my vulnerability. Firstly, there was an amazing young woman who is on the spectrum and is now among my friends, mostly because of what she did at the conference. This woman supported me by doing all sorts of things. She helped me use the public transport in the city where I was. She realised when I needed some space and gently steered me towards the quiet room set aside for Autistic attendees. She even bought me a can of Coke on one occasion. There was no paternalism or judgement, just one woman seeing a need in another and assisting. This young woman became a positive enabler and turned what could have been a very stressful experience into something which I enjoyed. My talk was well-received and I had a great time.
In contrast, I had another memorable interaction with a conference volunteer, one which was not quite as helpful. On the first day of the conference I left partway through the first session because I found the content triggering. I was seated near the exit so I didn’t think I bothered anyone by slipping out. I went to the Autistic attendees’ quiet room and played with my phone. A little while later a couple of the non-Autistic conference volunteers came in. I had a nice conversation with them but it seemed a little odd. It soon became apparent that we were speaking at cross purposes. I was forty years old speaking to adults but they seemed to think they were adults speaking to a child. At one point one of the ladies asked ‘So Jeanette do you live at home with your parents?’ I may have been a little mentally unwell and vulnerable but I am an Autism advocate nonetheless. I responded strongly with ‘I live in a house which I own. My parents live in a different state. I haven’t lived with them for twenty years.’ But this exchange seemed to confirm something I had been aware of for some time – some non-Autistic people view adults on the spectrum as if we were children.
A lot of my adult Autistic friends also have this experience. It is very irritating, even invalidating. I have lived independently for most of my adult life. I work in a professional job where I have quite a degree of autonomy and responsibility. I have a mortgage and people seek out my opinion of issues related to Autism. I am the author of a number of books and am considered an expert in my field. I host a radio program. I have been described as a genius on a number of occasions and I have a Masters degree. How then is it possible for people to see me as a child? I have a number of Autistic friends who are parents themselves and yet they are still treated as if they need a grown up to help them do things which they have been doing successfully for years. These people are hardly children and are rightfully annoyed when people treat them as such.
The other thing to remember is that many people on the Autism spectrum have had some very unpleasant life experiences. I know people )including myself) who have been victimised and abused, people who have been in institutional settings such as psychiatric hospitals, children’s homes and prisons. Most people who have been through such horrors are seen by the rest of society as maybe having had to grow up too quickly but Autists like me still find ourselves being infantilised, despite these things.
I do not know why this infantilising happens. I’m sure there’s someone writing a PhD thesis about it as I write (and if there is and they read this, I’d like to see that thesis :)) The fact is that it happens and it is invalidating and downright rude. For people who have experienced life as adults and have a lot to contribute to the world, being treated as if we were eleven and asked whether we live at home with our mummy is extremely irritating. People on the Auitsm spectrum do all the adult things that other people do. Things like
- Drinking alcohol
- Enjoying sex
- Having children
- Driving cars
- Having the whole range of sexual preferences and gender identities that neurotypical folks do
- Going to work and work in a variety of different roles, including managers and CEOs
- Being role models and mentors
- Studying and working as academics
- Owning property
- Running their own business
- Making decisions affecting their own and family members’ futures
- Participating independently in sports and leisure activities
- Choosing a faith
- Being involved in politics and civic life
- Doing every other thing that other adults do.
If you want to irritate and be dismissive to an Autistic adult, treat them as if they were a child – you’re pretty much guaranteed to succeed in your aim. However, if you want to show respect and make the most out of our talents and skills, please treat us as responsible adults.
Me being, y’konw grown up. I’m probably liaising with a publisher or something…
YennPurkis 
Very well put Jeanette, it is quite amazing too that some people who have previously treated autistics as intelligent capable human beings suddenly become all paternalistic/condescending when they find out about the diagnosis. If the person could do brain surgery competently yesterday when you did not know they were autisitc I am 100% sure they can still competently do brain surgery today, even though you know they are autistic. Another annoying thing is to assume that someone on the spectrum never needs support becuase they appear to manage well and to assume that needing support is an indication of being of lesser worth.
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That’s so true Emma. People talk to me about Autism and I dunno what they think my interest in the topic is. However as soon as I say ‘I’m a lived experience expert’ or I’m an Autistic person’ it’s like they have an attitude change
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As an aside, I’m distinctly disgusted by the idea of 2 NT conference stewards calmly walking into the designated Autism-friendly quiet room, and there attempting to force social interaction on people. Renders the room useless, as far as I can see.
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Personally I think it’s linked to the inherent different-ness that comes with interaction between people on the autistic spectrum and those on the neurotypical/allistic spectrum. People always feel threatened by what they do not know. (see also
if interested in details.)
If you are in the majority you belittle and put down the others as much as you humanly can because that gives a nice self righteous ego boost. You are better, more worthy, you do not need to question the social rules and habits you adhere to, your view of the world in not touched by people who are still little children who do not know better or better yet (A$ speak to follow) so broken and disordered that they will never understand because this monster call autism cancer sickness disease terrible murder bankrupticity that keeps your loved ones hostage would never let them. As soon as they are cured from this they will see how RIGHT you are.
They feel threatened by us because we are different. It doesn’t matter if we actually intend to steal their children, turn them all into terrorists, ruin their community, burn down their house or if we are just minding our own business. The perceived threat level does not change one iota. Even worse if we just mind our own business that means it’s much less likely that we fight back when they viciously invalidate our point of view to mollycoddle their own neurosises. It’s always easier to pound on a coward who won’t fight back. This is how they deal with it subconciously. The sad thing is we need to actually become threatening before they will let up and they will never truly stop. Some will learn, hopefully most. But just like racisism or homophobia this cannot be extiguished. This is how humans work.
I just hope we manage to change the social rules just like countless other minorities before us and hopefully even countlesser more after us. 🙂
That being said I must apologise for not drinking, driving, holding a job, having children or a proper sex life atm but I make it up by being so smart the academics don’t know what to do with me, deal? 🙂
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It’s ironic that an immature ego (Cook-Greuter) leads so many folks to infantilize egos with more maturity.
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When someone gets all condescending and using the “Special Ed Voice” (you know, That Voice) with me, I just put on a “Special Ed Voice” too, and talk back to them in exactly the same way.
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2 of my sons are spectrumites, one Aspie, one autie w/ cognitive delay. Eric is 21 ( autie) and corrects people if the say “Good boy Eric!” he’s replies “Eric good man, yes!”. He has a cognitive level of 3 yrs but he knows full well he is a man, not a boy.
I recently hired a worker ( for one day only, then fired her) to assist my elder son Chris (24 Aspie, college graduate and occasional guest author on my blog). He has some challenges in terms of how to keep his living environment clean, which is a hindrance to his living on his own with his daughter. Her role was simply to be help foster a habit of cleanliness. She never spoke to Chris while in the home, Chris went out for a smoke annoyed with her, and as she left, she said ” good job Chris, high five! ” He looked at her disbelieving, as did I. We could not believe she was speaking to him as if he was a 2 year old baby!!! EVERYONE needs assistance with something, EVERYONE, that need does not somehow make someone LESS, it simply means they are human. I wonder how those that minimize the person they are supporting would feel if someone dud the same to them.
Excellent post, thank you!!
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I am reading this for the third time today. What an excellent vocalization of a common conundrum! I am 49, and some people still talk to me as if I were 10. Apart from basic condescension, I think some others do so unintentionally because of a certain inexplicable childlike quality that may emanate from our unusual perceptions (in my case, I think this is true). Our cognitive styles enable us to perceive in a different way, and difference is sometimes threatening to others, or just mystifying. Our vulnerability coupled with our marked abilities can be quite a daunting combination for people not on the spectrum. They have no ‘frame’ for us, and that includes, sadly, some people who work in autism and disabilities – hence your experience at the conference with those who talked down at you. Fortunately for me, in my field of work (art, music and research) people tend to be more accepting and even admiring of eccentricities, and being autistic is just another way of Being that is embraced. I find it ironic, though, that folks in the field of psychology are more likely to display lack of empathy towards the very people they claim to be studying or helping! Thanks again for yet another great insight, Jeanette!
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Your points are spot on, Bunny. Academia does afford a space for eccentricities to be accepted, to a degree. I think even that is changing, and growing more limited as funding dwindles. Ironically, I went back to uni 2 yrs ago to start a Masters degree in primary traching, but found their teaching styles to be in complete antithesis to what they advocate as inclusive, acceptable teaching practices. I loathed every minute there. I was being told what autism is all about; irrespective that I live it.
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Sadly, this is the clime that persists, despite valiant attempts to move forward. A kind of neuro-colonialism at play.
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Thanks BunnyHopscotch. I like your insights into this issue, particularly around where it comes from. And I agree wholeheartedly that we tend to confuse some people who have no frame of reference with which to view us.
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Wonderful post … Thanks for sharing
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I’m a year late in saying so, but great post! I too struggle with allistic people talking to me like I’m five, assuming I can’t learn/know anything about “advanced” subjects, attempting to police my autistic behaviors (like the oh-so-helpful college classmate who kept telling me “Quiet hands!” as if I were her minor child), asking me if I live with my parents, and expressing shock/disgust when they learn that I’m married. This stuff was not amusing when I was 18, and it still fails to amuse me in my 30s.
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My absolute pet hate. I get it from my 69 yo mother too. I really wish I could step outside myself to calmly witness what I do that elicits such attitudes from others. I’m not sure these people are even aware they do it. There is always vehement disagreement it happens if I bring their behaviours up in conversation (seen as harsh confrontation) and it is simply my interpretation of their well meant intentions. Yes…okay.
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Hmmm, well since autism is a childhood issue (apparent from research dollar allocations) then all autistics must be children!
(Just turned 55…)
Omg I’m female too!!! I like math… Oh wait I must have an extreme male brain!
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So I wonder what the most effective response for us would be. I sometimes do better if I sort of figure out a response tactic in advance. We could, for instance, be direct and honest (my first choice usually) and say something like, “I am not a child, I am (insert current age here); your tone of voice / phrasing / etc. indicates you equate me with a child. Can you explain why? I find it belittling and actually dehumanizing.”
I might work on that phrasing but am fried right now… any thoughts? Thanks!
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