Undermining comments about autism

[Opal93]

I am becoming increasingly upset with more and more ridiculous comments about autism. I know for a long time people didn’t understand it but surely there’s enough on TV and the internet for people to be at least a little bit more informed? Here are a few of the most ridiculous comments, ranging from old to young people. I know none of them come from malice but I do think to myself “SERIOUSLY??” And often don’t know how to respond. “ he doesn’t look autistic.” “At least it’s not a disability” “at least it’s not Down’s syndrome” “did you find out at your scan and were you offered a termination?” “He’s not that bad” “at least he might be a genius” “you shouldn’t have another baby what if it is like him” “he just needs more discipline”

@LizzieAnt - no im sure you are right. I was just thinking about this specific child and by less aware i dont mean he has no awareness of anything (i realise it might read that way) but i was thinking about the awareness of sensory input sink girl was talking about. Eg my son would be very upset by a helicopter overhead. This child would not seem to be upset by one. My child percieves touch as an pain, but another child might not. Its very easy to think my child can or cant do x and extrapolate. It hadnt occured to me that the boy at school was not making eye contact because he hand't been taught it and he might like being taught it, rather than because he was instinctively avoiding it.

As the saying goes if you have met one person with autism you have met one person with autism ,my son has severe autism and learning disabilities,but he will sit on my knee and open my eyes to peer into them ,he's very cuddly too

I learned long ago to just play deaf to any comments except those from other parents of autistic children. Even lovely friends say stupid things like 'he'll eat if he's hungry' or 'you need to be firmer about bedtime.' Nope. Classic symptoms of autistic children include starving themselves rather than eating food they don't want, and sleeping less than four hours in 24. Very difficult to handle but not a symptom of lazy parenting.

Try to ignore them. There's better things to focus our energy on, imo.

It's the old saying isn't it. You know one person with autism, then you know one person with autism.

My DD is affected massively by hers, but not in the same ways as a lot of other five year olds with autism. She can speak (she doesn't stop!) her vocabulary, reading, writing, numeracy is advanced for her age. She has no learning difficulties, she can use a toilet and get dressed, and feed herself and do lots of the 'normal' things a typical five year old can do. She can hold it together at school with 1:1 support. She masks at school hugely. There is another child in her class, same sex same age with autism too. They're apples and oranges, their needs entirely different. It is quite difficult to believe that they have the same condition but they do. I do believe my DD has a disability but I would never compare her with another child who has autism (and/or learning difficulties) who is more profoundly impacted. That would be downright offensive I think.

But she cannot do lots and lots of things a NT five year old can, or at least without significant preparation and planning on our part. A message home saying 'it's non school uniform/dress up day at school next week' means a week of discussions, choices, explanations as to why school do this, a comic strip, possibly a meltdown or two at the thought of doing it. School would excuse her from doing it with zero issues but then if she arrived at school and she was the only child not doing it, she'd lose it too. We're only in reception and I already hate World Book Day and Conic Relief! Because at school, you wear your uniform, and as far as DD is concerned - that's it, the end.

We have the stupid comments too, because she masks so well outside of home. Can't possibly be anything wrong with her, looks you've brought her out and she's fine. Yes she is now on the surface, but we've planned for this brief trip all morning and if I don't do some OT based sensory stuff when we get home with her headphones on for a good hour when we get home this brief trip will cause one hell of a meltdown later this afternoon!

People have no clue what life as a parent to a child with autism is like. None. And no, we're not all on the spectrum a little bit!

I have an autistic child and have had all of the comments. People mean well I think when they say oh you would never know, he looks fine! I don't think people understand it.

@BlueLobelia DD seems like she's making eye contact with people. She's not when you pay close attention, she's looking at their eyebrows or glasses etc. She knows even at five years old that's what you're supposed to do (no ones ever forced her).

She does make proper eye contact well with us at home, when she is comfortable and relaxed.

Ah, I see Mildredpuppy. What can also happen, of course, is that something that's more or less fine one day might cause problems the next day. Like the helicopter noise mentioned. My DS would be ok with that sometimes, but could be completely floored by it another time. For him, it depends on his underlying anxiety, which is always there, but varies in its severity. So the threshold of what he can cope with changes. Noise and confusion cause him to become anxious too, so it's a bit of a vicious circle.

[quote timeforanewnameagain]@BlueLobelia DD seems like she's making eye contact with people. She's not when you pay close attention, she's looking at their eyebrows or glasses etc. She knows even at five years old that's what you're supposed to do (no ones ever forced her).

She does make proper eye contact well with us at home, when she is comfortable and relaxed. [/quote]
yes! This is it. It's obvious now it has been pointed out to me! DS looks at mouths, or slightly to one side. Yy to eyebrows or glasses.

I did not really 'get' it. If anyone asked (and indeed the various assessments over the years have) i would have said no issues with eye contact. It's way way more subtle than that.

This thread in many ways has really helped educate me. Thank you.

@BlueLobelia You live and learn don't you! One of the first things that I changed when DD was diagnosed and we started to understand was me saying 'look at me when I'm speaking to you please!' if she was being told off. In most circumstances if you're being reprimanded in life it's impolite not to look a the person speaking to you. For DD, in a situation where she is uncomfortable- like if I was asking her not to do something - she'd look up at the ceiling (like she was eye rolling, ha!) and I've had to train myself not to think of it as her being rude. She just in those moments can't manage it.

I don’t flinch when people teach eye contact but I’m genuinely baffled why so many think it is a necessary prerequisite to communication, learning or participation. I’ve lost track of the frankly mind numbingly stupid hurdles people build to stop my child accessing education. Eg the Ed psych who insisted that he must learn to sit at table, and follow instructions before he could learn (he could read/write/basic maths at that stage..how did that happen then?), or the Special school who insisted he must stop biting his nails before they did anything else and yet had failed to notice he was able to read), or the swimming teacher who said he couldn’t do swimming lessons because he kept splashing her despite her teaching him to splash and him not having the language or understanding to know that was only for the first lesson....
ds doesn’t mind eye contact or cuddles but his language is preschool so if it’s distracting I’d say he’s better gazing to the side to listen hard.

@MildredPuppy

My stock response to 'he doesnt look autistic' has been 'its the way we cut his hair' but ironically that is true . He has long hair now and several reports mention his long hair in relation to autism and people have stopped saying he doesnt look autistic. In fact a head teacher at one of his failed schools said to him 'if you cut your hair you'd look less special and make some friends' and to me 'he does look a bit special now'. His EP report says something about social awareness being poor evidenced in his hiding behind his hair.

So hair cuts seem to be an autism indicator in the wider world.

That's really interesting. My son has long hair as his barbers closed some years ago and he didn't want to go anywhere else. He did try a couple of other places initially, generally at my insistence and with a great deal of persuasion and reluctance, but they obviously weren't the same as his old barber's and so he stopped having his hair cut altogether. I'd never thought of it as an 'autistic look' before.

My autistic boy has a buzz cut and finds long hair on boys very strange. We have to endlessly explain that some boys have long hair, but he finds that very funny.....it’s difficult

My Ds struggles with having his hair cut as part of his sensory issues. Ironically lockdown has been perfect as I trimmed all our hair (*cough cough- using the dog clippers.....) and he was fine with that. It's slightly wonky at the back (and DS was horrified to see his ears!) but worked better.

@Gladimnotcampinginthisweather

I don't know where the 'eye contact thing comes from. I rarely if ever make eye contact. I look at the other person's mouth. If we make autistic children make eye contact it doesn't stop them being autistic.

Obviously I don’t make them make eye contact - there would be no physical way to do so. They don’t understand or respond to instructions, I can’t even get them to look at something I’m pointing to, so there’s no way I could make them make eye contact.

What I do do is, when they do make eye contact I give them a positive response - a big smile, I used to say “good looking!” but I don’t need to do this any more. And I do this because it benefits them massively to look at peoples faces, see their emotions, pay attention to their mouths moving etc, sometimes they might try to copy a facial expression etc.

What this has meant for us is that my twins now seek out eye contact as a positive thing for them - one especially will now come up to me, look me in the eyes and grin, flap, cuddle me. He also seems to be understanding more words. He enjoys this social interaction so much and I haven’t forced it, but it was just something that didn’t occur to them to do. It’s definitely not painful for them while for others with autism it definitely it.

It doesn’t mean that those who struggle with eye contact are “less aware” but I think there can be different causes - for my two it definitely seems they are under-sensitive to social interactions, spoken words, sensory input. Others are much more aware and sensitive to these things, so the result can be the same but the cause and the way to handle it are different.

If my twins were engaging with play, learning language etc I wouldn’t care that they don’t make eye contact. For them, the lack of awareness of social interaction caused delays in their learning (just as intensive interaction has massively increased both their awareness of others as well as their play skills and understanding of language, it’s like a social conversation).

@5zeds

I don’t flinch when people teach eye contact but I’m genuinely baffled why so many think it is a necessary prerequisite to communication, learning or participation. I’ve lost track of the frankly mind numbingly stupid hurdles people build to stop my child accessing education. Eg the Ed psych who insisted that he must learn to sit at table, and follow instructions before he could learn (he could read/write/basic maths at that stage..how did that happen then?), or the Special school who insisted he must stop biting his nails before they did anything else and yet had failed to notice he was able to read), or the swimming teacher who said he couldn’t do swimming lessons because he kept splashing her despite her teaching him to splash and him not having the language or understanding to know that was only for the first lesson.... ds doesn’t mind eye contact or cuddles but his language is preschool so if it’s distracting I’d say he’s better gazing to the side to listen hard.

I think maybe it’s not “eye contact” specifically but looking at faces - children learn so much from looking at other people’s faces.

I can see that for some it’s not helpful and can actually be harmful but that’s not always the case. Just as hand over hand is harmful and “forcing a child to do x” for some, for others it’s a comfortable and helpful way to learn (I would obviously never force if they were resistant, but they wanted to say build Duplo but didn’t know how - helping them do something many times is how they learn the things they want to do most of the time. Occasionally they’ll be highly motivated to learn something by themselves - eg they can both navigate and work iPads far better than I can and everything they know about it comes from trial and error because they don’t copy anything).

This is why I find it frustrating when anyone says X therapy is always harmful, Y strategy is abusive. Of course forcing a child to do anything they don’t want to do is abusive and harmful but that’s not my experience at all with my children, and probably very different to the experiences of those with autism that presents and affects very differently.

We’ve never done ABA for example, but I can imagine that if you had children like mine it could be beneficial while it would also be be very harmful for a child with a hypersensitive, social anxious presentation.

Then you’ll get people saying “eye contact / social interaction does make your child anxious, they just can’t tell you”, by people who’ve never so much as seen a photo of my children. It’s so patently untrue. One of my twins does have anxiety around specific things due to a visual impairment and it’s blatantly obvious when he’s nervous or anxious - it happened today and he was actually shaking, about something that he
used to love (sitting in a swing). Obviously at the first sign of distress in my children I stop whatever is happening, but I’ve never seen even a glimmer of distress about any of the things mentioned above - and if they were distressed by something they would look away, withdraw their hand etc. I would never force anything on them, and it’s horrible to be told that I must be forcing them to do things when I never would.

I rarely hear stupid comments anymore about my boys because they're great at masking when out and about.A few years ago a paediatrician in hospital said " he can't be autistic, he's smiling"
My usual response to silly statements is "god bless your ignorance" usually stops them in their tracks.

When he was diagnosed the ed posych saw me doing it and asked me how I had learned that. I said i did not elanr it, I just did it because it made things easier.

When DS was diagnosed the neurologist made a point of listing all the ways in which we had been scaffolding him and adapting our parenting without even realising it, it was nice to know that we had been doing right by him.

The main things I find in the autistic community right now is that there are a lot of loud voices pushing the "we're au-some/au-tastic" and "autism is my superpower" and "it's the next phase of human evolution" narrative. Autism isn't something to hide or be ashamed of and we always talk to DS1 and DS2 about their strengths, positive autistic role models, the importance of difference, etc but this "we're au-some rah rah" message glosses over the fact that not everyone is having a brilliant time, not everyone is "just quirky", and that autism is - for many people - a disability and has a negative impact on various parts of their life. I'm not wording it very well but it's as if there is becoming the acceptable face of autism, the proverbial quirky misfit, and the face of autism that no one talks about and is therefore not accepted, such as those people who are non-verbal, not able to live independently, etc. It distills the spectrum down into two opposing sides with "good" autism at one end and "bad" autism at the other and as far as the general public are concerned, they're the only two types that exist which is why they come out with such ignorant comments. The spectrum isn't linear, it's more like a wheel with each area of function being like a spoke around the central hub, the greater your difficulty in that area the shorter that particular spoke is. Some people with have a relatively circular wheel whereas others will have a very spiky one - DS2 for example is very high functioning in one area of cognitive ability (95th centile when tested) but varies between the 3rd centile and 40th centile for all other areas. If you had a conversation with him in the street (and didn't pay too much attention to mannerisms, the one track subject type, etc) you probably wouldn't pick up too much to make you think "ah, he's autistic" but if you then walked off and left him there he wouldn't be able to find his way home even if he was in his own local area.

@BuggerBognor

YADNBU OP.

On here, whenever anyone describes their arsehole DP, within 5 posts some fuckwit comes along and says “have you had him tested for autism —hun—?” Yeah, because if you pick up the DSM and flick through to the ASC criteria, literally all it says is “bit of a cunt”. MN is not great at deleting disablist comments from what I’ve seen.

My ASC DS is at an independent school, with a 1:1. He is bright but disruptive enough to need full support. The school knows I know what the EA says about reasonable adjustments so he’ll be staying there for now. Other parents not thrilled, but tough shit.

@BuggerBognor who pays for one to one? We've just had diagnosis for DS10 and now forking out on top of fees for LS several times per week.

[quote BuggerBognor]@ConfusedAdultFemale thank you DS struggles with any change so I’m digging my heels in to keep him there. It’s depressing how many indie parents think you are paying to avoid any neurodiversity... (even the comment on here about state school made me raise an eyebrow, but I can see the PP did not intend it that way).[/quote]
Yep. A supposed good friend stopped talking to me after I revealed our diagnoses (his and mine).

I've had parents whinge before that DS gets 1:1 and "it's not fair because he's getting an advantage over the other kids"

It's disgusting the way that people talk about people with autism. My little nephew is being assessed and in laws keep saying 'there's definitely something wrong with him' and it irks me to no end. I've doled out a fair few bollockings!

@FoxyTheFox

I've had parents whinge before that DS gets 1:1 and "it's not fair because he's getting an advantage over the other kids"

Yes we have had that. One parent even complained to the school that it was wrong!

Yup- very bright boy ASD, ADHD, Epilepsy- but social communication is very difficult. I'm presently trying to explain that because last Friday was last week and this is now Wed, which is this week, it doesn't mean a week has passed. The concept of it needing to be 7 days to pass before it is a whole week is not getting through and he's very frustrated. At the park, so not near the calendar and he won't accept looking at the phone calendar.

He's now under my scarf lying on the park bench with his Buff over his face. He wants me to carry him to the car like this- isn't going to happen!

Because he's 9 and too heavy, not just because I won't!

The only thing I say about autism is, so your kid is clever then, most of the famous musicians and scientists had austism... And let's be honest autistic kids most are far cleverer than those that haven't got Austism

Girls with autism tend to get diagnosed later than boys because they are better at hiding it to fit in with their peers.

There are some kids who have other illnesses along with autism that do impact their learning abilities, doesn't make them less than those that don't, they are equally if not more loved by those around them.