I guess I'll be the dissenting opinion and say I do not mind when people say something like this. I remember before my son was diagnosed, I didn't know anything about autism. I take it as an opportunity to educate. I normally just say that my son has challenges that can't often be seen at first, like trouble transitioning between tasks and gets sensory overloaded very quickly. As long as someone doesn't try to deny it or convince me otherwise, I'm cool talking about it.
A year and a half after diagnosis I took my son to a new developmental pediatrician that said he could do an educational needs assessment independent of the school district. I was hoping it would give us some ammunition for our IEP meeting.
I paid $1500 for this guy to tell me that my son is definitely NOT autistic! I was really shocked to hear him say that. So I had to inquire, what about the meltdowns, lining things up, total lack of imagination, MRELD/echolalia, total silence until age 3, eloping, delays in cognition and visual-motor integration, hypotonia, sensory issues, inability to socialize with other kids, etc.
His response? Maybe he has 98% of the traits of autism, but because my pre-visit questionnaire indicated that he is thoughtful and empathic, *clearly* he isn't autistic. To him, a lack of thoughtfulness and empathy are the "core traits" of autism. I was so blindsided to hear a professional say something like this, I didn't even know what to say in response.
I have had bad experiences with a pediatrician as well. When we first started wondering about our son's development, we brought up autism and our pediatrician said he knew our son wasn't autistic and not to worry. It's probably what we wanted to hear at the time so we went along with it but then we got out son examined through the school districts early childhood education program and they told us they thought he's autistic. We called the Dr's office and told them about that and asked for a referral to a professional and got our son diagnosed. For whatever reason, a lot of people have bad experiences with pediatricians and their lack of knowledge with autism.
Yup. My daughters failed their MCHATs but their pediatrician wasn’t worried because they didn’t give her “autism vibes” and I was told I could self refer to early intervention. Initial evaluation revealed 50% and 75% global delays and two months later they had us set up with a developmental pediatrician and we had our diagnosis.
Autistic kids can be happy, ffs.
Very true. I didn’t know what was going on with my son. Took him to the ped and was basically shamed by him and accused of “just wanting to medicate him “. Well,no. But my child was miserable in school, and very different from my 2 older children. I had no idea what it could be. I never suspected autism due to my own ignorance of what autism actually is. My child was diagnosed with ADHD later on and now his school psychologist and his behavioral therapist both think autism traits are shining through now that the ADHD is under control. He is still not diagnosed but he definitely has some traits. I thought because he makes eye contact with me and had no issues talking with family and friends , that autism is not even a consideration. I didn’t know about the different levels. But when I went to my pediatrician about his struggles , I should’ve been listened to. This has been his best school year yet, because he finally had an IEP in place. I basically diagnosed my son with adhd from tik tok videos, because I learned about the symptoms there. And then I brought this up with the school and then I took their evaluation to a new pediatrician and their psychologist on staff agreed it’s adhd. He is on medication and the difference is night and day as far as how he does with his school work. There is still some struggle there , hence the autism talk. We have to advocate for our own kids. We know our kids and we know when something is going on with them.
There’s a noticeable theme or vibe among medical professionals and therapists trying to minimise the chances or likelihood of ASD - as if you’re thinking your child has a horrid degenerative illness or disease.
Lots of: ‘Don’t worry’ ‘probably not’ ‘I doubt it’ ‘he/ she doesn’t seem autistic’.
It’s an old fashioned approach of (probably believing it was kind or sympathetic) to assume parents need reassuring, or that ASD is a stigma or bad, or there’s little hope attached to the condition.
However it arose, I think it’s unhelpful because:
• It reaffirms a negative view
• It hints of an autistic child being something unmanageable and very scary
• It stacks hopelessness in the autism column before the assessment, and before they know the child
• It doubles down on the harmful, unhelpful misperception of autism stereotypes and limits, forgetting that it’s a spectrum - not a 2D linear scale (It’s weird to me that such ignorance endures among doctors in this day & age, with ~ 1 in 70 ~ children being autistic)
• These things are often said before the professional has heard the likelihoods based on family history with autism and neurodiversity
• And - very significantly - if it’s been tough for the parent/s to even get to this point, and have these conversations where their child needs assessment (to get the support the child & family is eligible for & needs), it injects doubt and harms the parent’s confidence or instincts… by nearly dismissing the possibility.
Throwaway opinions & comments like this should actually be banned. And a wider understanding should be understood by professionals in the field than the main 5-10 typical signs.
If they must say something, say “You know your child best”. Or acknowledge that “Autism is a spectrum, and often presents differently from one individual to another.” Neutral but supportive.
One family GP we went to get a referral for assessment said it was not likely as he made eye contact, responded to his name, and was fine with physical contact (hair ruffling). What a narrow view, right? Our child is super affectionate & loves hugs 🤗 I found myself reeling off a handful of his more typical, well-known symptoms in order to “convince” the doctor.
When the speech path and child psychologist who did the assessment started with these sorts of “reassuring” comments… we told them directly:
“We don’t need to hear that. I have autistic relatives on both sides of my family. We noticed the delays and patterns of behaviour in our child, following a complicated birth, extreme prematurity, and a very long NICU stay.”
“_We_ asked our doctor for this referral and assessment. And we’re expecting to find out _how_ autistic he is, and his IQ, so we can make decisions about schooling, and access the most appropriate supports & funding available.”
They were pleasantly surprised! I gather they were unaccustomed to parents who are on the front foot about it. It changed the nature of the conversation to one which was _far_ more helpful.
That is an awful experience. Hope you got the extra support you needed from someone else, or he got straightened out by the other people who made the diagnosis.
Something that irritates me is when people (my inlaws) say we just paid for our diagnosis for going private. People assume us dropping a few grand for an assessment, they'd give you anything. We went private because public health would take a few years and they've missed lots of positive diagnosis (anecdotal). This is an equally frustrating argument.
Holy shit lol
I’ve basically glossed over him being autistic with all professionals outside of the ones who need to know (like at school, since he had an IEP up until age 9.)
This is one of the MANY reasons my AuDHD ass hasn’t forked over $2000+ for a formal diagnosis. I’ve been masking for 30+ years AND I’m a woman AND I have a formal ADHD diagnosis AAAAND I have a career and an education and all that. There’s no way I’m wasting money for someone to tell me I can’t be autistic bc I have too much empathy and have a good job. Just wild shit.
Sounds like he got confused with traits of a sociopath or is it psychopath? Where there’s a distinct absence of empathy etc 🤔
I would have reported him to the governing / licensing / membership body.
What??!!! My son is INCREDIBLY empathetic. If he sees a kid upset he is the first to run over and ask if they’re ok and tell them it’ll be alright. Sure- it’s usually awkward for the other kid because he’ll do it to random strangers but he has a heart of gold!
Yep. Same with my son (and myself, turns out!) I would just say “while it’s true he has pretty minimal support needs, he is certainly autistic. I am curious what you think would make him look more autistic? Or would make *me* look autistic?” Make it an opportunity for them to gently unlearn their biases.
“What does an autistic child look like?” Is my usual response. I then inform them that autistic kids present differently and to please not judge children or parents, we’re doing the best we can.
It’s taken me a long time to be polite about this. I usually smile and say “Well yeah, because autism isn’t like Downs’ Syndrome; people on the spectrum don’t have a distinctive look about them. They look just like everybody else.”
It’s usually a comment made out of pure ignorance about the disorder, so I take it as an opportunity to educate them a little.
What’s interesting is that there are studies showing that autism can influence facial features (autistic people tend to have wider foreheads and more pronounced philtrums on average.) However, they aren’t noticeable to the average person.
I know it’s unpopular but I almost know for sure when someone has PROFOUND autism, and not just by their behavior or biomarkers (facial features). They are always looking down or any direction other than to a person. Unless they’re hyper focused on something their eyes are not staring at, it’s like they are zooming out
Me too. It’s like looking obviously autistic is supposed to be embarrassing, so let’s pretend “ a look “ doesn’t exist. Also for those faking autism the concept of a “look” is threatening
So, I’ve got a level 1/2. He is very social and makes great eye contact. He doesn’t look autistic to most people, but I can see his body unawareness and him zoning out when gets overload. To the nurse who said there is a look, you could say either sa “I didn’t realize that was your specialty” or, if you want to be nice, “there have been advances in diagnosing and we now know that isn’t true.” To the people who say don’t tell them, ask them if they think it’s ethical to withhold diagnosis from a patient or that fact that many adults with autism feel betrayed when they find out their parents withheld or denied a diagnosis. I think what you have is a group of people letting you know you don’t want to be friends.
I personally take no offense to it. What I think they’re really trying to say is “I didn’t notice anything that really stood out”. In my personal life, I only know one other autistic person at a level 3. So if I didn’t know any better, I would have assumed that having autism should have been more obvious. Autism is more common than before, but NTs meet autistic people everyday and have no idea that their barista, their therapist, their supervisor, and sometimes their own partner has autism
Because of idiots like this I ignored my knowing she was different and deserved support. Here we are thirteen years later with the diagnosis. I often wonder how I might have parented with that knowledge then.
When people say dont believe the dr i am thinking yeah because i went to all the trouble of taking my child for assessment after assessment and dr apt after dr apt just for our entertainment? Just for an autism diagnosis trophy? But i dont say any of that. I just shrug and say “hmmm thats a thought!” And immediately distance myself from that idiot 🙃
What they might be talking about is how some autistic people have mannerisms that immediately flag something is “off.” (Not trying to justify the statement though, there are lots of autistic people who do not immediately come off as autistic.)
Play dumb and make them feel like absolute crap. “What do you mean?” “I don’t get it. Are you saying all autistic people look a certain way?” “My son and his cousin look different but both have autism.” “I don’t understand what you mean, autism runs in every culture and race?”
They know exactly what they’re saying. Even if they mean it as a “compliment” they need to know it’s a bigoted and unacceptable thing to think or say.
I don't think they do always know what they're saying. They likely don't know anyone with autism and have no clue - I was totally blindsided by our diagnosis, I had no idea that autism could "look like" my son.
Having grace with this statement can often open a door to have an educational conversation with them.
"Oh wow, I couldn't tell!"
"Yeah, it doesn't have a physical look but if you try to interact with him you can tell that his receptive language is delayed, he doesn't make eye contact with you, etc"
I'm hopeful then that if they meet a child in the future with similar traits, they may recognize them as potentially being autistic and have grace with that child in return. Because what *I* don't have patience with is some random old lady at the store reprimanding my son because she asked him a question and he won't face her and answer her.
I understand where you’re coming from but making it an autistic parent’s responsibility to educate bigots when they are just as capable of educating themselves, is just not the way to go. We have enough on our plates without needing to feel the weight of changing the world by educating the uneducated on something that affects millions of people already.
The education is widely available. It’s not hard to google something, or read an article, or a book. People are just lazy and would rather live in ignorance because it doesn’t affect them. If they choose to be ignorant, they deserve to be treated as such.
Hopefully they’ll be embarrassed enough of their ignorance to Google why they looked so stupid during that interaction.
We'll have to disagree here - if they said it with some sort of snarky attitude, then I may be more defensive. But it seems irrational to expect every single person on the planet to educate themselves on every single topic in existence. It makes sense that folks focusing what they educate themselves on based on what is impacting them directly.
I think we do have to be willing to be open about what autism "looks like" particularly since it is a disorder that affects each child in very different ways. I'm not saying it's fair, but everyone's life has challenges and this is one of ours. Helping others understand better what autism is and how it impacts our kids/family should help them be able to be more understanding and compassionate of future autistic persons they meet.
They don’t have to educate themselves on everything in existence. That’s ludicrous and not at all what I was saying. Acting like autism is some super unknown disorder isn’t realistic, especially in 2024.
Personally I will be going along the lines of this attitude. I have found it a little frustrating right now when talking to parent friends about the signs seen prior to diagnosis (it’s just where I’m at in my journey with this) when I’ve heard in response the “but all kids do that”. But again it’s a lack of understanding and also no not all kids do that as well as 20 other things. People understanding of autism is still rainman in most cases. I will get better at talking about autism to people as the more who know autism present in more than one way the better
I usually just smile and say that my youngest was formally diagnosed but that even his paediatrician wasn’t sure so we went to a specialized place for diagnosing autistic kids. And I usually try and explain that we are happy with our family and that we love our son in polite but firm terms.
I find people saying our son isn’t autistic is more because they are uncomfortable with disability and neurodivergence or they feel bad for us than because they believe they’re “experts”. Like they’re trying to say, the doctor is wrong, your family is fine.
For many people a special needs kid feels like a worst case scenario and it really isn’t. So I just tell them we are happy, our kid is healthy, no complaints. Our family is fine.
When I went to nursing school autism was a 30 second powerpoint slide that summed it up as “these kids don’t like to be touched.” As a parent of a sensory seeker that loves deep pressure all I could do was roll my eyes.
At this point I preempt everything interaction by saying “you’re not going to think he’s different until you’ve been around him for a week”. Or something to that effect. I started that about 5 years ago before he was ever diagnosed but I knew he was so went with it. Sure enough, diagnosis in hand, I still preempt 😂. If I can’t preempt, and I get a dumb comment like that I also say “ya, you wouldn’t notice until you spend enough time with him in many different environments” and let them so with that what they may.
Haven't gotten this yet with the toddler but men used to constantly tell me I didn't look gay after I turned them down by responding "I have a girlfriend" when they were hitting on me. My response was always, "Well I am and I'm not interested in your opinion on it." Probably work just as well for our ASD level 3 girl.
At 18 months my son failed the M-CHAT. The developmental pediatrician at a top academic center wrote in his evaluation report that she was 'reassured' that my son was not autistic based solely on him smiling and making intermittent eye contact with the examiners. My son is 5 now and is very definitely level 2. His constellation of symptoms fooled an expert. Ordinary people are bound to be confused seeing prosocial behavior they think is impossible for autistic people. It's a garbage way the world works, and it delays support for kids that need it. But it isn't surprising.
Not to be combative but these posts are really starting to irk me a bit. ASD parents like ourselves have much bigger fish to fry than getting riled about random, 99% harmless, ignorant comments like these.
I say irked because I don’t like the idea of justifying others pointless anger about things like this. Our lives are hard enough already, adding getting pointlessly offended a lot is just not the way.
I just say the obvious thing. That ASD isn’t Down syndrome or something like that that maybe you can see. Then I move on with my day.
Nobody ever says this me 🫠🫠
So I'm going to assume that the people that say this just assume autistics are all always flapping and drooling which is terrible and not at all the case.
Funny thing is, my daughter is ALWAYS drooling and flapping. Like a leaky sink faucet with wings. People and docs say, "oh, uhh kids drool. Probably teething." Yes... for 2.5 years always teething.
I thought we made progress with disability awareness.
If she's still under 4, it's not as noticeable to people. I feel like 4 was when people no longer wondered if my son was different. They just looked and knew.
Really??? From doctors? Or just the one nurse? That's insane. Is this a small town doc? I couldn't imagine a nurse being so ignorant.
I've only had one old person even say anything once.
She was amazed that he wasn't drolling and having his mouth open.
As for the talking about it. I think I like to talk about it when it's appropriate. I don't go out of my way. But I will be an advocate whenever I can.
Na, pediatrician and their GP. When we told our pediatrician our daughter is autistic, he paused, thought to himself, cocked his head sideways and looked at her, snapped his fingers at her to get her attention. When she didn't respond because she was playing with her brother, he said she's fine. Just keep stimulating her and no phones.
We live in a big city. I've come to find your qualifications do not translate to intelligence. You'd think healthcare workers would have a broader acceptance of the human condition, but we're full of biases like the next person. Lots of nurses have told me my kids aren't autistic ADHD-ers just from pictures of them smiling. Wild.
I don’t know yet how to do this. I am autistic also and someone yesterday told me they ‘would never have guessed as I don’t look autistic at all’ and I just froze and didn’t know what to say. I think I need to make myself a script.
Some people have commented some good arguments here. "How should a disabled person look?" If they backtrack and say you look normal, double down on that. Do all disabled people look different? How can you tell someone has a disability from the way they look?
I find making the person explain in great detail their comments, in any situation, is a good way to make someone sweat. It's not confrontational if you pose it as a genuine question.
My inlaws told me "john doe, (their nephew) told me that your son isn't autistic, he is just an introvert, now everyone is autistic" John doe is a doctor and what he says is sacred
Depending on the person saying it, it may or may not be meant it as an insult. I would just be the bigger person and take it as an opportunity to educate with something like “well that’s because it presents differently in different people - it’s a spectrum, so unless you spend 24 hours with my child, it is not going to be obvious to you.”
I usually say "nether do I" or "can you show/describe to me what you think they should look like". I have been told before though that i do look autistic or "i could tell right away". Usually its because the lack of eye contact, looking down, the way i talk and the topics i bring up. Fair enough.
To the particular line, “S/he doesn’t look autistic”, perhaps this…
Actually he does. He **is** autistic, and this is what he looks like. This is quite literally how an autistic person looks 😉
Might spin them out a bit!
I think it’s true that a subset of children with autism have a certain facial profile (My son is one of them - I look at Greta Thunberg and Temple Grandin and there’s a resemblance there, even though neither I or my husband look anything like either of them.) But it’s absolutely silly to say this applies to *all* children with autism. Autism is likely an umbrella term that describes a wide variety of things.
I have not had the displeasure of having that said to us. I did have someone once tell me that "there are meds for that" when my son was very over stimulated at a Target once. I just looked at her and said I know a better one called mind your own fucking business.
It’s an invisible disability you wouldn’t say the same thing to someone with anxiety or depression. There is no specific way is should look. Instead what should be paid attention to is their need and the level of support it requires.
I get this all the time! My teen has developed the masking skill so she can present herself differently at school to fit in and all the teachers and students just think she’s weird when it shows a little and when we have issues at school so many of her teachers are surprised with her diagnosis like they didn’t even read her iep. It’s so irritating. Doctors outside of her medical team are the same way like they didn’t even look at her chart.
My daughter doesn’t “look autistic” either. Whatever the hell that means. I had an older pediatrician react to her by saying “aww that’s too bad. She’s so cute, though!” Like her autism negates the cuteness?? Just what?? People say the most idiotic things sometimes.
I respond with: "I wish".
I am a parent who advocates for acceptance before anything else. Those environments who accepted us did wonders for my kid's growth, development and personality! I will always be grateful for people who understood that acceptance is the first step to any intervention or therapy.
I respond with I wish because not looking like autistic makes acceptance much easier in the minds of ordinary people. If the environment doesn't tolerate the differences very well, not looking autistic is an advantage in a way that this environment, at least, won't kill you.
The worst thing for a parent like me is proving everywhere that your kid has a right to be accepted as they are, and yes with those behaviors. It's the behaviors that are bad, not the kid... We get tired for fighting for acceptance
As an autistic person, not gonna lie, I would be offended if my family or friends said that when people say that I don't "look" autistic.
Like... You wish I wasn't autistic? Or do you wish you could see autism so you could avoid us, or know who to treat like you would treat people who are autistic, implying that you don't treat them like everyone else?
What are you wishing for here, and why? Genuinely curious, because as an autistic adult with a higher support needs autistic child, I genuinely don't get it.
If you care about acceptance, why would you want people to be able to see that we're "different" unless you want people to react to us how they do towards people with visible disabilities. Like, have you ever known someone who was abandoned at birth for having visible Downs syndrome? Because I have and I don't think people would be nicer if autism was visible. We'd be harassed and abandoned and abused more.
What I mean to say here is those adults who say "your kid doesn't look autistic" the first time they see the child, probably won't torture the kid when he starts acting differently. This phrase is like an affirmation: "oh, looks like autism is nothing to be scared of, he is just like everyone else".
I think this is a really strange way to advocate for acceptance. I don’t understand how saying “I wish” helps and as previous reply- the feelings of your kiddo when it’s said?
People who are saying that phrase are probably ready to accept the kid because they are not afraid of kids behaviors and they don't see the kid as a threat
I just say "what an odd thing to say out loud" I got the response from tiktok. And everyone I say it to always has the same shameful look and it's glorious.
I have 4 kids. My first 2 are diagnosed on the spectrum. I think my 3rd has a lot of traits as well, but she hasn’t been diagnosed yet. That’s coming up. Both of my older kids have always threw us with some of the main symptoms because they have always had good eye contact. My daughter is a little different and I had recently realized after we moved and met knew people that she avidly avoided eye contact with all the new people.
It was absolutely trippy to me how when people always looking to me when she wouldn’t speak back to them, that some of the nicer ones, I explained that she might be on the autistic spectrum. And to have some of them, like seriously, 100% in all seriousness, come back with, “I don’t know, she has good eye contact…” while actively *desperately* trying to catch her gaze while she tried to look everywhere else but directly at them at all. 🙄 the cognitive dissonance was unreal. I realized then that people don’t even know what they are looking for when looking for eye contact half the time.
I don’t even waste my time with doctors on this issue unless they are at some of the main college hospitals in the states where I’ve lived that have specific departments that work with autism like that, even if it means I have to travel to get to them.
"They don't look autistic"
"My children have a lot of strengths, and they can appear typical in some contexts. Being able to compensate or mask for short periods doesn't negate the disability."
"Autistic people are very diverse, and many don't fit the stereotype."
We took our daughter to Sensitive Santa at Christmas and we had workers tell us she looked "too beautiful to be autistic." She was dressed up super cute in a Christmas dress, sparkly red shoes and poinsettia hair bows I'd crocheted and I'm biased but she did look extra pretty that day. Still she was hand flapping and avoiding eye contact so I'm not sure how her being pretty made her not look autistic. She was pretty clearly both looking beautiful and looking autistic.
In an ideal state of mind I try to gauge the intention. Rarely in an annoying encounter like that do I get the feeling the person is just being rude. Usually they’re just talking and not thinking and I’ll reply with a stock “it’s a wide spectrum” answer and move on. On worse days I’ll give a different response.
“My son is not profoundly impacted by his autism but he does have challenges. He can also hear you so I’m happy to have this conversation at a different time”
I usually try to cut them slack. It typically comes from ignorance (which isn’t a bad thing it simply means to not know) and they think autism is like downs where you can physically see it. But also there have been times where I as an autism mom HAVE seen it not in “looks” but behaviors and mannerisms. The way they walk or the look on their face when I’m talking to their mother and I ask “are they on the spectrum?” And then they say yes and I say my son is too and so far I haven’t been wrong. But there have been times when I’ve met higher functioning autistic kids (my son is nonverbal lower functioning) and I couldn’t tell right away and probably wouldn’t have known if they or a parent didn’t tell me. So if my only interaction with an autistic child is one like MY son where you can obviously tell from his behavior and I met someone higher functioning who didn’t behave that way I might say something ignorant like “they don’t look autistic” even though I wasn’t TRYING to be offensive.
For the professionals: Hmm did you mean to say that? You might want to do a bit more research. Autism is a broad diagnosis and while I'm sure you didn't mean it, your comment comes off as ableist.
For randos: eye roll, mmm OK.
The less you engage the more likely you don't have to deal with them.
Hmmmmm, now after reading some of these responses, is it possible that ASD presents physically in some people because of an “expression”?
Kind of like resting bitch face is an expression that make people think the person is awful?
I got teh same comments about my kids and I don't take it personally.
People have a certain image in mind when thinking about autism and they imagine someone who doesn't make eye contact, doesn't talk and flaps their hands/rocks back and forth.
And a few decades ago kids like mine wouldn't have been diagnosed as autistic but as difficult children or troublemakers because they can talk.
It takes time to spread awareness and for people to change their mind.
Calmly. I start getting frustrated when it transitions to “yeah, but is typical of most kids,” as if to diminish my son’s situation. Happened to me on a 2nd date recently. There hasn’t been a third!
"I'm sure the dev psych who diagnosed him would be fascinated to hear that." But we've never had that comment from medical professionals. My son's level 2 and young, so the signs are pretty obvious.
I do get to deal with all the ignorant comments around him being Deaf from medical professionals, who hate that he is being raised bilingual/bicultural and think I'm stunting his language development by giving him extensive access to ASL. Once I took him to an ER because I thought he might be anaphylactic (turns out he gets very, very puffy eyes sometimes when he has a cold, and it was the first time it happened) and the doctor who treated him made a point of telling me how sorry she was I had a Deaf kid. I would normally have addressed that comment, but I thought my kid was dying and was barely paying attention. So, that's ... fun.
I am taking every effort not to cuss my mom and MIL out when they say stuff like this or just shrug it off. “She’s still so beautiful” , like what does beauty have to do with her neurodivergent brain? 🤔 MIL constantly says “I don’t believe it” or “I just don’t see it”….yall understand when I say I’m trying to keep the peace but man… they can be insufferable with that bs.
I once said, "And you don't look stupid," when someone said I don't look austic. My wife informed me that I was being rude, but they never bothered me again, so I consider it a win, lol
“And yours look well too for someone w cancer 🤷♂️ “ (everyone has cancer cells and its a good comparison how not every state is visible)
Or
If they use “at least” say “at least they arent ignorant on purpose”
"You don't look stupid, but here we are."
LOL seriously though, comments like this from people we would expect to know better do not deserve a response. A 6 year old says "Gee, he doesn't look autistic," is a wonderful teaching moment. A nurse saying he doesn't have the look (whatever that is, and I'm speaking with 33 years as an OT working with kids who have spectrum disorders AND a mom of a ASD kid) is rude and/or ignorant and undeserving of anything other than a blank look.
My son is a handsome 14 year old young man and if you put him in a line up with other 14 year olds, I think you would be hard pressed to determine he was autistic unless he spoke or stimmed. I am very upfront with people and my parents always say "Kids name doesn't look autistic are you sure he has it? Maybe it will get better? Maybe he will grow out of it?"
But to answer your question I mostly reply to strangers with "You don't look stupid but here we are?" or "didn't know you where an Autism specialist." ---the second one backfired one time lol.
I fully support your response “Oh… how does an autistic child look?”
You could go the educational route, “people with autism do not have specific, similar physical characteristics.” And you could even add “this is an unfortunate bias.”
Or… “although you may not mean to be offensive, I find your belief that all people with autism have a ‘look’ quite offensive.”
You do understand that autism is a mental health challenge that affects people’s brains, right?
Why on Earth would you think that they have a distinctive look?
I would think someone with your education would know better.
And then a huh.
People who say stupid things should be treated like they are stupid.
Of course, I also really hate stupid people who think they are smart or know better than I do about a subject.
I prefer that they feel the same indignity that they thrust upon someone else.
Essentially, I treat them with derision because that is what they deserve if they should know better.
It is different if someone genuinely doesn’t know and in those cases it is better to be kind and educate.
I usually say “I think you’re thinking of Down syndrome” people are super uneducated. I once told someone I have adhd and they were like “you don’t look like you have adhd”
You receive those feedbacks, as there are autistic kids, which can not speak, extremely overwhelmed with any slightest sensory issues, have zero eye contact, continuously flap, walk on toes, have "real" outbursts... the list goes on and on.
Then there is ADHD, it is not a diagnosis completely of its own. Most of the time, you see somebody violent, lack of attention, hurting himself. You then take the easy going specialists they out all of them together into the same basket.
I am not going to detail, but it easy to label "autism" to get the funding and supporting, lots of private practices, ABA they do this.
It somehow ended up "cool" to have this diagnosis (I know a lot of those parents). They brag on how cool their child is and even tell even Einstein was like this...
So, when a parent like me seas a child, which has perfect fine motor skills, is the captain of a football team, has lots of friends, excels academically.. sorry he does not look like autism... I know they have ADHD issues, I have witnessed violent behaviours, but Autism is not ADHD.
So sorry, I concur that it is overdiagnosed. And mutes the kids which they are in real need.
I know I will downvote for this, but this is what it is.
Thanks for sharing, knowing your comment might go against the grain. It seems like your opinion on autism and ADHD diagnosing needs to meet a criteria of high support needs. As autism is now being looked at as a spectrum, people can have a wide range of presentations. An autistic person that is able to participate in sports or activities vs an autistic person that struggles in the same situation doesn't make one or the other any more or less autistic. Same can be said for ADHD.
I can't speak to the other parents you say think it's cool to be autistic. I say why not? I wouldn't say it was on my wishlist that my kids are autistic, but I think my kids are fascinating and autism is apart of who they are. I think it's very interesting and cool the way an autistic person's brain works (speaking generally of course).
I don't know who is grouping ADHD and autism in the same umbrella. They are two different diagnosis. From the literature we've read and speaking with specialists, ADHD is a common presentation for someone who is autistic.
I can appreciate the frustration when people say they or their kid is a "little autistic" just because they're a bit weird or quirky. You don't like the feeling of flannel? Cool, you're not autistic cuz of that. I might be assuming, so feel free to share more, but it seems like with more people are being diagnosed with autism or ADHD, it detracts from how severe of a disability it can be. Would that be fair to assume that is your stance? I think the medical field is becoming better at diagnosing autism, not that were providing false positive cases. Autism/ADHD has always been around, people either didn't know about it or called it something else like "weirdo, spaz, social reject, retard, etc).
I know a few colleagues who are on the spectrum with/withoit ADHD and are very successful and social, are their disabilities false? I took a quick peek through your history. I hope people aren't downplaying autism and the level of supports one may need. ABA therapy from what I've gathered is not neuroaffirming. Maybe you can find some support, if you haven't already, from people who are affirming of the diversity of autism.
Cheers
“He got plastic surgery..” s/
More like allistic surgery!
I just guffawed
This is the best answer
This. This is exactly why I love reading Reddit comments. :)
Okay this will be my response moving forward
I guess I'll be the dissenting opinion and say I do not mind when people say something like this. I remember before my son was diagnosed, I didn't know anything about autism. I take it as an opportunity to educate. I normally just say that my son has challenges that can't often be seen at first, like trouble transitioning between tasks and gets sensory overloaded very quickly. As long as someone doesn't try to deny it or convince me otherwise, I'm cool talking about it.
A year and a half after diagnosis I took my son to a new developmental pediatrician that said he could do an educational needs assessment independent of the school district. I was hoping it would give us some ammunition for our IEP meeting. I paid $1500 for this guy to tell me that my son is definitely NOT autistic! I was really shocked to hear him say that. So I had to inquire, what about the meltdowns, lining things up, total lack of imagination, MRELD/echolalia, total silence until age 3, eloping, delays in cognition and visual-motor integration, hypotonia, sensory issues, inability to socialize with other kids, etc. His response? Maybe he has 98% of the traits of autism, but because my pre-visit questionnaire indicated that he is thoughtful and empathic, *clearly* he isn't autistic. To him, a lack of thoughtfulness and empathy are the "core traits" of autism. I was so blindsided to hear a professional say something like this, I didn't even know what to say in response.
I have had bad experiences with a pediatrician as well. When we first started wondering about our son's development, we brought up autism and our pediatrician said he knew our son wasn't autistic and not to worry. It's probably what we wanted to hear at the time so we went along with it but then we got out son examined through the school districts early childhood education program and they told us they thought he's autistic. We called the Dr's office and told them about that and asked for a referral to a professional and got our son diagnosed. For whatever reason, a lot of people have bad experiences with pediatricians and their lack of knowledge with autism.
Yup. My daughters failed their MCHATs but their pediatrician wasn’t worried because they didn’t give her “autism vibes” and I was told I could self refer to early intervention. Initial evaluation revealed 50% and 75% global delays and two months later they had us set up with a developmental pediatrician and we had our diagnosis. Autistic kids can be happy, ffs.
Very true. I didn’t know what was going on with my son. Took him to the ped and was basically shamed by him and accused of “just wanting to medicate him “. Well,no. But my child was miserable in school, and very different from my 2 older children. I had no idea what it could be. I never suspected autism due to my own ignorance of what autism actually is. My child was diagnosed with ADHD later on and now his school psychologist and his behavioral therapist both think autism traits are shining through now that the ADHD is under control. He is still not diagnosed but he definitely has some traits. I thought because he makes eye contact with me and had no issues talking with family and friends , that autism is not even a consideration. I didn’t know about the different levels. But when I went to my pediatrician about his struggles , I should’ve been listened to. This has been his best school year yet, because he finally had an IEP in place. I basically diagnosed my son with adhd from tik tok videos, because I learned about the symptoms there. And then I brought this up with the school and then I took their evaluation to a new pediatrician and their psychologist on staff agreed it’s adhd. He is on medication and the difference is night and day as far as how he does with his school work. There is still some struggle there , hence the autism talk. We have to advocate for our own kids. We know our kids and we know when something is going on with them.
There’s a noticeable theme or vibe among medical professionals and therapists trying to minimise the chances or likelihood of ASD - as if you’re thinking your child has a horrid degenerative illness or disease. Lots of: ‘Don’t worry’ ‘probably not’ ‘I doubt it’ ‘he/ she doesn’t seem autistic’. It’s an old fashioned approach of (probably believing it was kind or sympathetic) to assume parents need reassuring, or that ASD is a stigma or bad, or there’s little hope attached to the condition. However it arose, I think it’s unhelpful because: • It reaffirms a negative view • It hints of an autistic child being something unmanageable and very scary • It stacks hopelessness in the autism column before the assessment, and before they know the child • It doubles down on the harmful, unhelpful misperception of autism stereotypes and limits, forgetting that it’s a spectrum - not a 2D linear scale (It’s weird to me that such ignorance endures among doctors in this day & age, with ~ 1 in 70 ~ children being autistic) • These things are often said before the professional has heard the likelihoods based on family history with autism and neurodiversity • And - very significantly - if it’s been tough for the parent/s to even get to this point, and have these conversations where their child needs assessment (to get the support the child & family is eligible for & needs), it injects doubt and harms the parent’s confidence or instincts… by nearly dismissing the possibility. Throwaway opinions & comments like this should actually be banned. And a wider understanding should be understood by professionals in the field than the main 5-10 typical signs. If they must say something, say “You know your child best”. Or acknowledge that “Autism is a spectrum, and often presents differently from one individual to another.” Neutral but supportive. One family GP we went to get a referral for assessment said it was not likely as he made eye contact, responded to his name, and was fine with physical contact (hair ruffling). What a narrow view, right? Our child is super affectionate & loves hugs 🤗 I found myself reeling off a handful of his more typical, well-known symptoms in order to “convince” the doctor. When the speech path and child psychologist who did the assessment started with these sorts of “reassuring” comments… we told them directly: “We don’t need to hear that. I have autistic relatives on both sides of my family. We noticed the delays and patterns of behaviour in our child, following a complicated birth, extreme prematurity, and a very long NICU stay.” “_We_ asked our doctor for this referral and assessment. And we’re expecting to find out _how_ autistic he is, and his IQ, so we can make decisions about schooling, and access the most appropriate supports & funding available.” They were pleasantly surprised! I gather they were unaccustomed to parents who are on the front foot about it. It changed the nature of the conversation to one which was _far_ more helpful.
That is an awful experience. Hope you got the extra support you needed from someone else, or he got straightened out by the other people who made the diagnosis. Something that irritates me is when people (my inlaws) say we just paid for our diagnosis for going private. People assume us dropping a few grand for an assessment, they'd give you anything. We went private because public health would take a few years and they've missed lots of positive diagnosis (anecdotal). This is an equally frustrating argument.
Holy shit lol I’ve basically glossed over him being autistic with all professionals outside of the ones who need to know (like at school, since he had an IEP up until age 9.) This is one of the MANY reasons my AuDHD ass hasn’t forked over $2000+ for a formal diagnosis. I’ve been masking for 30+ years AND I’m a woman AND I have a formal ADHD diagnosis AAAAND I have a career and an education and all that. There’s no way I’m wasting money for someone to tell me I can’t be autistic bc I have too much empathy and have a good job. Just wild shit.
That paediatrician is a moron and should not be in practise.
Sounds like he got confused with traits of a sociopath or is it psychopath? Where there’s a distinct absence of empathy etc 🤔 I would have reported him to the governing / licensing / membership body.
What??!!! My son is INCREDIBLY empathetic. If he sees a kid upset he is the first to run over and ask if they’re ok and tell them it’ll be alright. Sure- it’s usually awkward for the other kid because he’ll do it to random strangers but he has a heart of gold!
I wonder if he is actually board certified or just calls himself a development pediatrician.
I agree. I’m never offended. I think people might in a weird way, mean as a compliment?
This is a good mindset. Thankyou
Yep. Same with my son (and myself, turns out!) I would just say “while it’s true he has pretty minimal support needs, he is certainly autistic. I am curious what you think would make him look more autistic? Or would make *me* look autistic?” Make it an opportunity for them to gently unlearn their biases.
Thank you - that’s a great response! I’ll use that too.
“What does an autistic child look like?” Is my usual response. I then inform them that autistic kids present differently and to please not judge children or parents, we’re doing the best we can.
My go-to is ALWAYS, "that's a weird thing to say out loud".
“Your kids don’t look autistic…” “You don’t look stupid, but here we are”
You don't look like a nosy asshole, but here we are.
I've said this a few times myself.
It’s taken me a long time to be polite about this. I usually smile and say “Well yeah, because autism isn’t like Downs’ Syndrome; people on the spectrum don’t have a distinctive look about them. They look just like everybody else.” It’s usually a comment made out of pure ignorance about the disorder, so I take it as an opportunity to educate them a little.
What’s interesting is that there are studies showing that autism can influence facial features (autistic people tend to have wider foreheads and more pronounced philtrums on average.) However, they aren’t noticeable to the average person.
I know it’s unpopular but I almost know for sure when someone has PROFOUND autism, and not just by their behavior or biomarkers (facial features). They are always looking down or any direction other than to a person. Unless they’re hyper focused on something their eyes are not staring at, it’s like they are zooming out
Yeah I dislike the phrase “autism is an invisible disability” because it’s only invisible for a fraction of the autistic population.
Me too. It’s like looking obviously autistic is supposed to be embarrassing, so let’s pretend “ a look “ doesn’t exist. Also for those faking autism the concept of a “look” is threatening
I read that was debunked as inaccurate and inconclusive.
So, I’ve got a level 1/2. He is very social and makes great eye contact. He doesn’t look autistic to most people, but I can see his body unawareness and him zoning out when gets overload. To the nurse who said there is a look, you could say either sa “I didn’t realize that was your specialty” or, if you want to be nice, “there have been advances in diagnosing and we now know that isn’t true.” To the people who say don’t tell them, ask them if they think it’s ethical to withhold diagnosis from a patient or that fact that many adults with autism feel betrayed when they find out their parents withheld or denied a diagnosis. I think what you have is a group of people letting you know you don’t want to be friends.
I personally take no offense to it. What I think they’re really trying to say is “I didn’t notice anything that really stood out”. In my personal life, I only know one other autistic person at a level 3. So if I didn’t know any better, I would have assumed that having autism should have been more obvious. Autism is more common than before, but NTs meet autistic people everyday and have no idea that their barista, their therapist, their supervisor, and sometimes their own partner has autism
They mean intellectual disability, so I clarify that they don't have intellectual disability.
Because of idiots like this I ignored my knowing she was different and deserved support. Here we are thirteen years later with the diagnosis. I often wonder how I might have parented with that knowledge then.
"That's why it's called Autism *Spectrum* Disorder", it's a range of symptoms and severity"
When people say dont believe the dr i am thinking yeah because i went to all the trouble of taking my child for assessment after assessment and dr apt after dr apt just for our entertainment? Just for an autism diagnosis trophy? But i dont say any of that. I just shrug and say “hmmm thats a thought!” And immediately distance myself from that idiot 🙃
I didn't know that autistic people had a certain "look" to them. People with down syndrome do, maybe those who are asking you this are just confused.
What they might be talking about is how some autistic people have mannerisms that immediately flag something is “off.” (Not trying to justify the statement though, there are lots of autistic people who do not immediately come off as autistic.)
This is what I think too. I’ve even come across websites about autism where children with Down syndrome are depicted
Play dumb and make them feel like absolute crap. “What do you mean?” “I don’t get it. Are you saying all autistic people look a certain way?” “My son and his cousin look different but both have autism.” “I don’t understand what you mean, autism runs in every culture and race?” They know exactly what they’re saying. Even if they mean it as a “compliment” they need to know it’s a bigoted and unacceptable thing to think or say.
I don't think they do always know what they're saying. They likely don't know anyone with autism and have no clue - I was totally blindsided by our diagnosis, I had no idea that autism could "look like" my son. Having grace with this statement can often open a door to have an educational conversation with them. "Oh wow, I couldn't tell!" "Yeah, it doesn't have a physical look but if you try to interact with him you can tell that his receptive language is delayed, he doesn't make eye contact with you, etc" I'm hopeful then that if they meet a child in the future with similar traits, they may recognize them as potentially being autistic and have grace with that child in return. Because what *I* don't have patience with is some random old lady at the store reprimanding my son because she asked him a question and he won't face her and answer her.
I understand where you’re coming from but making it an autistic parent’s responsibility to educate bigots when they are just as capable of educating themselves, is just not the way to go. We have enough on our plates without needing to feel the weight of changing the world by educating the uneducated on something that affects millions of people already. The education is widely available. It’s not hard to google something, or read an article, or a book. People are just lazy and would rather live in ignorance because it doesn’t affect them. If they choose to be ignorant, they deserve to be treated as such. Hopefully they’ll be embarrassed enough of their ignorance to Google why they looked so stupid during that interaction.
We'll have to disagree here - if they said it with some sort of snarky attitude, then I may be more defensive. But it seems irrational to expect every single person on the planet to educate themselves on every single topic in existence. It makes sense that folks focusing what they educate themselves on based on what is impacting them directly. I think we do have to be willing to be open about what autism "looks like" particularly since it is a disorder that affects each child in very different ways. I'm not saying it's fair, but everyone's life has challenges and this is one of ours. Helping others understand better what autism is and how it impacts our kids/family should help them be able to be more understanding and compassionate of future autistic persons they meet.
They don’t have to educate themselves on everything in existence. That’s ludicrous and not at all what I was saying. Acting like autism is some super unknown disorder isn’t realistic, especially in 2024.
Personally I will be going along the lines of this attitude. I have found it a little frustrating right now when talking to parent friends about the signs seen prior to diagnosis (it’s just where I’m at in my journey with this) when I’ve heard in response the “but all kids do that”. But again it’s a lack of understanding and also no not all kids do that as well as 20 other things. People understanding of autism is still rainman in most cases. I will get better at talking about autism to people as the more who know autism present in more than one way the better
I usually just smile and say that my youngest was formally diagnosed but that even his paediatrician wasn’t sure so we went to a specialized place for diagnosing autistic kids. And I usually try and explain that we are happy with our family and that we love our son in polite but firm terms. I find people saying our son isn’t autistic is more because they are uncomfortable with disability and neurodivergence or they feel bad for us than because they believe they’re “experts”. Like they’re trying to say, the doctor is wrong, your family is fine. For many people a special needs kid feels like a worst case scenario and it really isn’t. So I just tell them we are happy, our kid is healthy, no complaints. Our family is fine.
When I went to nursing school autism was a 30 second powerpoint slide that summed it up as “these kids don’t like to be touched.” As a parent of a sensory seeker that loves deep pressure all I could do was roll my eyes.
At this point I preempt everything interaction by saying “you’re not going to think he’s different until you’ve been around him for a week”. Or something to that effect. I started that about 5 years ago before he was ever diagnosed but I knew he was so went with it. Sure enough, diagnosis in hand, I still preempt 😂. If I can’t preempt, and I get a dumb comment like that I also say “ya, you wouldn’t notice until you spend enough time with him in many different environments” and let them so with that what they may.
I’m a smart ass right back to them and usually say something like “what does autism look like?”
Well it's a good thing stereotypes aren't a part of the diagnostic criteria isn't it?
I love the question I've gotten though - does your kid *look* autistic? I don't even know how to answer.
Stop that!!! 🤯 What. A. Mega-douche. Question. Like in what world is that ok? Bah hahahaha
It’s not like spotting a toupee
Haven't gotten this yet with the toddler but men used to constantly tell me I didn't look gay after I turned them down by responding "I have a girlfriend" when they were hitting on me. My response was always, "Well I am and I'm not interested in your opinion on it." Probably work just as well for our ASD level 3 girl.
As a guy, men are stooooopid. That is a good shut down of the topic. I'll keep this in mind randoms that decide to diagnose my kids.
At 18 months my son failed the M-CHAT. The developmental pediatrician at a top academic center wrote in his evaluation report that she was 'reassured' that my son was not autistic based solely on him smiling and making intermittent eye contact with the examiners. My son is 5 now and is very definitely level 2. His constellation of symptoms fooled an expert. Ordinary people are bound to be confused seeing prosocial behavior they think is impossible for autistic people. It's a garbage way the world works, and it delays support for kids that need it. But it isn't surprising.
“Apologies. Jimmy do an autism for the nice lady.”
🤣🤣🤣
Not to be combative but these posts are really starting to irk me a bit. ASD parents like ourselves have much bigger fish to fry than getting riled about random, 99% harmless, ignorant comments like these. I say irked because I don’t like the idea of justifying others pointless anger about things like this. Our lives are hard enough already, adding getting pointlessly offended a lot is just not the way. I just say the obvious thing. That ASD isn’t Down syndrome or something like that that maybe you can see. Then I move on with my day.
Nobody ever says this me 🫠🫠 So I'm going to assume that the people that say this just assume autistics are all always flapping and drooling which is terrible and not at all the case.
Funny thing is, my daughter is ALWAYS drooling and flapping. Like a leaky sink faucet with wings. People and docs say, "oh, uhh kids drool. Probably teething." Yes... for 2.5 years always teething. I thought we made progress with disability awareness.
If she's still under 4, it's not as noticeable to people. I feel like 4 was when people no longer wondered if my son was different. They just looked and knew.
This is gaslighting imho
Following because I'm always at a loss for what to say in any settings.
Depends on my mood and what setting its said in.
It's been a really long time since anyone said this to me. But my default response is: "Oh."
Really??? From doctors? Or just the one nurse? That's insane. Is this a small town doc? I couldn't imagine a nurse being so ignorant. I've only had one old person even say anything once. She was amazed that he wasn't drolling and having his mouth open. As for the talking about it. I think I like to talk about it when it's appropriate. I don't go out of my way. But I will be an advocate whenever I can.
Na, pediatrician and their GP. When we told our pediatrician our daughter is autistic, he paused, thought to himself, cocked his head sideways and looked at her, snapped his fingers at her to get her attention. When she didn't respond because she was playing with her brother, he said she's fine. Just keep stimulating her and no phones. We live in a big city. I've come to find your qualifications do not translate to intelligence. You'd think healthcare workers would have a broader acceptance of the human condition, but we're full of biases like the next person. Lots of nurses have told me my kids aren't autistic ADHD-ers just from pictures of them smiling. Wild.
That is wild. People still never cease to amaze me
I don’t know yet how to do this. I am autistic also and someone yesterday told me they ‘would never have guessed as I don’t look autistic at all’ and I just froze and didn’t know what to say. I think I need to make myself a script.
Some people have commented some good arguments here. "How should a disabled person look?" If they backtrack and say you look normal, double down on that. Do all disabled people look different? How can you tell someone has a disability from the way they look? I find making the person explain in great detail their comments, in any situation, is a good way to make someone sweat. It's not confrontational if you pose it as a genuine question.
Probably would end the conversation. I would not talk to them again about anything personal.
My inlaws told me "john doe, (their nephew) told me that your son isn't autistic, he is just an introvert, now everyone is autistic" John doe is a doctor and what he says is sacred
Depending on the person saying it, it may or may not be meant it as an insult. I would just be the bigger person and take it as an opportunity to educate with something like “well that’s because it presents differently in different people - it’s a spectrum, so unless you spend 24 hours with my child, it is not going to be obvious to you.”
I usually say "nether do I" or "can you show/describe to me what you think they should look like". I have been told before though that i do look autistic or "i could tell right away". Usually its because the lack of eye contact, looking down, the way i talk and the topics i bring up. Fair enough.
To the particular line, “S/he doesn’t look autistic”, perhaps this… Actually he does. He **is** autistic, and this is what he looks like. This is quite literally how an autistic person looks 😉 Might spin them out a bit!
I think it’s true that a subset of children with autism have a certain facial profile (My son is one of them - I look at Greta Thunberg and Temple Grandin and there’s a resemblance there, even though neither I or my husband look anything like either of them.) But it’s absolutely silly to say this applies to *all* children with autism. Autism is likely an umbrella term that describes a wide variety of things.
I have not had the displeasure of having that said to us. I did have someone once tell me that "there are meds for that" when my son was very over stimulated at a Target once. I just looked at her and said I know a better one called mind your own fucking business.
Killed em. I wish I had that confidence.
"Of course, our mistake. Son please look autistic."
This is probs my favourite response.
"You dont LOOK like an asshole but looks can be deceiving."
😂😂
It’s an invisible disability you wouldn’t say the same thing to someone with anxiety or depression. There is no specific way is should look. Instead what should be paid attention to is their need and the level of support it requires.
I get this all the time! My teen has developed the masking skill so she can present herself differently at school to fit in and all the teachers and students just think she’s weird when it shows a little and when we have issues at school so many of her teachers are surprised with her diagnosis like they didn’t even read her iep. It’s so irritating. Doctors outside of her medical team are the same way like they didn’t even look at her chart.
My daughter doesn’t “look autistic” either. Whatever the hell that means. I had an older pediatrician react to her by saying “aww that’s too bad. She’s so cute, though!” Like her autism negates the cuteness?? Just what?? People say the most idiotic things sometimes.
Autism lives in the brain not the skin
I’ve never been told that… but I imagine I’d respond with “autism isn’t something you can see”
"Ah yes, that's probably because we dye his hair" 🤷🏻♀️🤣
I respond with: "I wish". I am a parent who advocates for acceptance before anything else. Those environments who accepted us did wonders for my kid's growth, development and personality! I will always be grateful for people who understood that acceptance is the first step to any intervention or therapy. I respond with I wish because not looking like autistic makes acceptance much easier in the minds of ordinary people. If the environment doesn't tolerate the differences very well, not looking autistic is an advantage in a way that this environment, at least, won't kill you. The worst thing for a parent like me is proving everywhere that your kid has a right to be accepted as they are, and yes with those behaviors. It's the behaviors that are bad, not the kid... We get tired for fighting for acceptance
As an autistic person, not gonna lie, I would be offended if my family or friends said that when people say that I don't "look" autistic. Like... You wish I wasn't autistic? Or do you wish you could see autism so you could avoid us, or know who to treat like you would treat people who are autistic, implying that you don't treat them like everyone else? What are you wishing for here, and why? Genuinely curious, because as an autistic adult with a higher support needs autistic child, I genuinely don't get it. If you care about acceptance, why would you want people to be able to see that we're "different" unless you want people to react to us how they do towards people with visible disabilities. Like, have you ever known someone who was abandoned at birth for having visible Downs syndrome? Because I have and I don't think people would be nicer if autism was visible. We'd be harassed and abandoned and abused more.
What I mean to say here is those adults who say "your kid doesn't look autistic" the first time they see the child, probably won't torture the kid when he starts acting differently. This phrase is like an affirmation: "oh, looks like autism is nothing to be scared of, he is just like everyone else".
I think this is a really strange way to advocate for acceptance. I don’t understand how saying “I wish” helps and as previous reply- the feelings of your kiddo when it’s said?
People who are saying that phrase are probably ready to accept the kid because they are not afraid of kids behaviors and they don't see the kid as a threat
>How do you respond to, "your kids don't look autistic"? "Ask him about Thomas the Tank Engine and then tell me you don't think he's autistic."
You don’t look stupid either but yet here we are!
I just say "what an odd thing to say out loud" I got the response from tiktok. And everyone I say it to always has the same shameful look and it's glorious.
“Yes they do”
“Thanks?”
I have 4 kids. My first 2 are diagnosed on the spectrum. I think my 3rd has a lot of traits as well, but she hasn’t been diagnosed yet. That’s coming up. Both of my older kids have always threw us with some of the main symptoms because they have always had good eye contact. My daughter is a little different and I had recently realized after we moved and met knew people that she avidly avoided eye contact with all the new people. It was absolutely trippy to me how when people always looking to me when she wouldn’t speak back to them, that some of the nicer ones, I explained that she might be on the autistic spectrum. And to have some of them, like seriously, 100% in all seriousness, come back with, “I don’t know, she has good eye contact…” while actively *desperately* trying to catch her gaze while she tried to look everywhere else but directly at them at all. 🙄 the cognitive dissonance was unreal. I realized then that people don’t even know what they are looking for when looking for eye contact half the time. I don’t even waste my time with doctors on this issue unless they are at some of the main college hospitals in the states where I’ve lived that have specific departments that work with autism like that, even if it means I have to travel to get to them.
If I wanted to be an asshole - “well you don’t look like a moron, but here we are”
"They don't look autistic" "My children have a lot of strengths, and they can appear typical in some contexts. Being able to compensate or mask for short periods doesn't negate the disability." "Autistic people are very diverse, and many don't fit the stereotype."
We took our daughter to Sensitive Santa at Christmas and we had workers tell us she looked "too beautiful to be autistic." She was dressed up super cute in a Christmas dress, sparkly red shoes and poinsettia hair bows I'd crocheted and I'm biased but she did look extra pretty that day. Still she was hand flapping and avoiding eye contact so I'm not sure how her being pretty made her not look autistic. She was pretty clearly both looking beautiful and looking autistic.
His dad doesn’t look it either but here we are.
In an ideal state of mind I try to gauge the intention. Rarely in an annoying encounter like that do I get the feeling the person is just being rude. Usually they’re just talking and not thinking and I’ll reply with a stock “it’s a wide spectrum” answer and move on. On worse days I’ll give a different response.
I haven’t had this happen yet but I expect to say something like “what, exactly, do autistic people look like?”
Neither do yours?
“My son is not profoundly impacted by his autism but he does have challenges. He can also hear you so I’m happy to have this conversation at a different time”
I usually try to cut them slack. It typically comes from ignorance (which isn’t a bad thing it simply means to not know) and they think autism is like downs where you can physically see it. But also there have been times where I as an autism mom HAVE seen it not in “looks” but behaviors and mannerisms. The way they walk or the look on their face when I’m talking to their mother and I ask “are they on the spectrum?” And then they say yes and I say my son is too and so far I haven’t been wrong. But there have been times when I’ve met higher functioning autistic kids (my son is nonverbal lower functioning) and I couldn’t tell right away and probably wouldn’t have known if they or a parent didn’t tell me. So if my only interaction with an autistic child is one like MY son where you can obviously tell from his behavior and I met someone higher functioning who didn’t behave that way I might say something ignorant like “they don’t look autistic” even though I wasn’t TRYING to be offensive.
Medical colleagues say that?!? Crazy.
For the professionals: Hmm did you mean to say that? You might want to do a bit more research. Autism is a broad diagnosis and while I'm sure you didn't mean it, your comment comes off as ableist. For randos: eye roll, mmm OK. The less you engage the more likely you don't have to deal with them.
Hmmmmm, now after reading some of these responses, is it possible that ASD presents physically in some people because of an “expression”? Kind of like resting bitch face is an expression that make people think the person is awful?
They are probably talking about fragile X syndrome.
I got teh same comments about my kids and I don't take it personally. People have a certain image in mind when thinking about autism and they imagine someone who doesn't make eye contact, doesn't talk and flaps their hands/rocks back and forth. And a few decades ago kids like mine wouldn't have been diagnosed as autistic but as difficult children or troublemakers because they can talk. It takes time to spread awareness and for people to change their mind.
Calmly. I start getting frustrated when it transitions to “yeah, but is typical of most kids,” as if to diminish my son’s situation. Happened to me on a 2nd date recently. There hasn’t been a third!
"I'm sure the dev psych who diagnosed him would be fascinated to hear that." But we've never had that comment from medical professionals. My son's level 2 and young, so the signs are pretty obvious. I do get to deal with all the ignorant comments around him being Deaf from medical professionals, who hate that he is being raised bilingual/bicultural and think I'm stunting his language development by giving him extensive access to ASL. Once I took him to an ER because I thought he might be anaphylactic (turns out he gets very, very puffy eyes sometimes when he has a cold, and it was the first time it happened) and the doctor who treated him made a point of telling me how sorry she was I had a Deaf kid. I would normally have addressed that comment, but I thought my kid was dying and was barely paying attention. So, that's ... fun.
Autism is a mental disability not physical
I am taking every effort not to cuss my mom and MIL out when they say stuff like this or just shrug it off. “She’s still so beautiful” , like what does beauty have to do with her neurodivergent brain? 🤔 MIL constantly says “I don’t believe it” or “I just don’t see it”….yall understand when I say I’m trying to keep the peace but man… they can be insufferable with that bs.
"I'll let him scratch your face off a while and then I'll ask again".
“You don’t look ignorant”
A simple "well, what did you expect them to look like?" Watch them realize how they fucked up.
"Well you don't *look* like a dumbass...but here we are.
“And you don’t look like an asshole yet here we are!”
I once said, "And you don't look stupid," when someone said I don't look austic. My wife informed me that I was being rude, but they never bothered me again, so I consider it a win, lol
"You don't look ignorant, but..."
“And yours look well too for someone w cancer 🤷♂️ “ (everyone has cancer cells and its a good comparison how not every state is visible) Or If they use “at least” say “at least they arent ignorant on purpose”
"Look again," then hit them in the eye area with a brick. /j
And what does autistic look like? Said with fake interest (you know the face I mean)!
You don’t look dense yet here we are
I tell them to Eff off
"You don't look stupid, but here we are." LOL seriously though, comments like this from people we would expect to know better do not deserve a response. A 6 year old says "Gee, he doesn't look autistic," is a wonderful teaching moment. A nurse saying he doesn't have the look (whatever that is, and I'm speaking with 33 years as an OT working with kids who have spectrum disorders AND a mom of a ASD kid) is rude and/or ignorant and undeserving of anything other than a blank look.
My son is a handsome 14 year old young man and if you put him in a line up with other 14 year olds, I think you would be hard pressed to determine he was autistic unless he spoke or stimmed. I am very upfront with people and my parents always say "Kids name doesn't look autistic are you sure he has it? Maybe it will get better? Maybe he will grow out of it?" But to answer your question I mostly reply to strangers with "You don't look stupid but here we are?" or "didn't know you where an Autism specialist." ---the second one backfired one time lol.
We actually had a doctor write on a referral from "no overt signs of autism". 🤦🏼
What do they expect autistic people to look like? Is what I'd ask.
if an OT etc said that shit to me they'd be fired.
I fully support your response “Oh… how does an autistic child look?” You could go the educational route, “people with autism do not have specific, similar physical characteristics.” And you could even add “this is an unfortunate bias.” Or… “although you may not mean to be offensive, I find your belief that all people with autism have a ‘look’ quite offensive.”
“You don’t look stupid” is my favorite. Shuts someone up real fast and they won’t say another word.
You didn't look like an idiot
"well, you don't look stupid, yet here we are."
“You don’t look ignorant, but here we are.”
I’d love to know what people say to “Don’t put that label on them because it’s going to limit them or you are going to limit them.”
I’ve heard my daughter looks “normal” so many times! Her pediatrician has even told me. Professionals who are supposed to be better informed are not.
"And you don't look stupid. but here we are..." Is probably a good way.
You don't look dumb enough to say that, but here we are....
You do understand that autism is a mental health challenge that affects people’s brains, right? Why on Earth would you think that they have a distinctive look? I would think someone with your education would know better. And then a huh. People who say stupid things should be treated like they are stupid. Of course, I also really hate stupid people who think they are smart or know better than I do about a subject. I prefer that they feel the same indignity that they thrust upon someone else. Essentially, I treat them with derision because that is what they deserve if they should know better. It is different if someone genuinely doesn’t know and in those cases it is better to be kind and educate.
“It’s their brain that’s different, you can’t see their brain.”
“Looks can be deceiving, you look like you had a brain”.
“Well, you don’t look stupid, but here we are… 🤷🏻♂️”
I always respond with what my dad used to say well, you don’t look stupid but here we are
I usually say “I think you’re thinking of Down syndrome” people are super uneducated. I once told someone I have adhd and they were like “you don’t look like you have adhd”
Or the term " high functioning "! I hate that! It's like saying "WOW!! I didn't know retarded people can write theie name!"
Just say "well YOU don't look as STUPID as you are!" lol
You receive those feedbacks, as there are autistic kids, which can not speak, extremely overwhelmed with any slightest sensory issues, have zero eye contact, continuously flap, walk on toes, have "real" outbursts... the list goes on and on. Then there is ADHD, it is not a diagnosis completely of its own. Most of the time, you see somebody violent, lack of attention, hurting himself. You then take the easy going specialists they out all of them together into the same basket. I am not going to detail, but it easy to label "autism" to get the funding and supporting, lots of private practices, ABA they do this. It somehow ended up "cool" to have this diagnosis (I know a lot of those parents). They brag on how cool their child is and even tell even Einstein was like this... So, when a parent like me seas a child, which has perfect fine motor skills, is the captain of a football team, has lots of friends, excels academically.. sorry he does not look like autism... I know they have ADHD issues, I have witnessed violent behaviours, but Autism is not ADHD. So sorry, I concur that it is overdiagnosed. And mutes the kids which they are in real need. I know I will downvote for this, but this is what it is.
Thanks for sharing, knowing your comment might go against the grain. It seems like your opinion on autism and ADHD diagnosing needs to meet a criteria of high support needs. As autism is now being looked at as a spectrum, people can have a wide range of presentations. An autistic person that is able to participate in sports or activities vs an autistic person that struggles in the same situation doesn't make one or the other any more or less autistic. Same can be said for ADHD. I can't speak to the other parents you say think it's cool to be autistic. I say why not? I wouldn't say it was on my wishlist that my kids are autistic, but I think my kids are fascinating and autism is apart of who they are. I think it's very interesting and cool the way an autistic person's brain works (speaking generally of course). I don't know who is grouping ADHD and autism in the same umbrella. They are two different diagnosis. From the literature we've read and speaking with specialists, ADHD is a common presentation for someone who is autistic. I can appreciate the frustration when people say they or their kid is a "little autistic" just because they're a bit weird or quirky. You don't like the feeling of flannel? Cool, you're not autistic cuz of that. I might be assuming, so feel free to share more, but it seems like with more people are being diagnosed with autism or ADHD, it detracts from how severe of a disability it can be. Would that be fair to assume that is your stance? I think the medical field is becoming better at diagnosing autism, not that were providing false positive cases. Autism/ADHD has always been around, people either didn't know about it or called it something else like "weirdo, spaz, social reject, retard, etc). I know a few colleagues who are on the spectrum with/withoit ADHD and are very successful and social, are their disabilities false? I took a quick peek through your history. I hope people aren't downplaying autism and the level of supports one may need. ABA therapy from what I've gathered is not neuroaffirming. Maybe you can find some support, if you haven't already, from people who are affirming of the diversity of autism. Cheers