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”

Tbh I don't care any more what people think. I have a friend whose child has EDS & POTS & I don't know much about those, so I don't expect her to be an expert on my kids' Aspieness!
I do know the day my youngest finally gave up on school was one of my happiest ever.. all that stress.. just GONE!

We get the opposite. My son is severely autistic and has SLD and have heard “I didn’t realise autism could be that bad” 🤷🏼‍♀️ ‘Does he have something else as well?” No irs just plain old autism and learning disabilities.

@Doona you sound like a lovely friend already, maybe bring up this thread in conversation with your friend and say you’ve learned a bit about masking and if there is anything you can do to help. As a parent I’d be thrilled if a friend cared enough to ask me if I could do anything to help her relax. There may be things, but there may not be and just being there as a friend is worth it’s weight in gold ♥️

Whenever someone says DS2 doesn't look autistic, I say it's because we dye his hair. Totally shuts them up and confuses them at the same time.

I disagree with the fact that the worst comments are from autistic people. I see some pretty awful comments from parents with autistic children on some groups. Not saying all parents, as one of my friends has an autistic daughter and is a wonderful, understanding scvocwte. But there does seem to be an anger/ frustration from others quick to tell autistic adults that their experiences are not as valid as their child’s because they seemingly manage easier with things. Some of them seem to forget that their child will grow up to be an autistic adult too and may be holding down a job, relationship etc but still desperately holding everything together.
And then of course you get people who think it’s ok for them to talk on our behalf and tell others to call us ‘people with autism’. It pops up on nearly every thread like this. I’m autistic and myself along with much of the population prefers ‘autistic’. ‘Person with autism’ suggests it is something separate, rather than an integral part of who I am. It’s often the same people who happily tell autistic people that they are wrong to be offended by the puzzle piece symbolism. Some autistic people don’t mind these things but many people do. Those of us that do don’t need someone with no understanding of our situation to police the language we use around our own condition.
I also find it insulting on here, when ask someone is clearly abusive or unkind and it is suggested they are autistic. Most autistic people are caring and sensitive people who wouldn’t dream of behaving in some of the ways described. Many of us are vulnerable and have been bullied or abused ourselves. It’s hurtful that this is how some ignorant people view us.

Thanks Owlbethere. Our daughters are friends but I don't really connect with her mother, though we've both been very civil. But you've given me the idea to talk to the daughter and say we're good enough friends now for her not to worry too much about always being polite.

But there does seem to be an anger/ frustration from others quick to tell autistic adults that their experiences are not as valid as their child’s because they seemingly manage easier with things. Some of them seem to forget that their child will grow up to be an autistic adult too and may be holding down a job, relationship etc but still desperately holding everything together.

Not that they’re not as valid, but that their experiences are extremely different. This shouldn’t need pointing out but it’s a frequent issue.

And it’s not that some parents forget that their children will one day be adults, but that their children likely won’t be managing either a job or a relationship.

Apparently the worst thing you can do is suggest that the person talking to you eloquently about autism is less severely affected than your child who can only request single tangible items using PECS, or diagnosed age 2 vs diagnosed in 30s / 40s. This isn’t an insult, it’s a statement of fact. Yes, you may mask, but many autistic children can’t mask because they don’t have the understanding.

And just because a child is non-verbal doesn’t mean they have a learning disability or low IQ. Communication impairments are part of autism - for some this is much more severe. This myth is why so many autistic children end up in unsuitable schools for PMLD.

@SinkGirl

But there does seem to be an anger/ frustration from others quick to tell autistic adults that their experiences are not as valid as their child’s because they seemingly manage easier with things. Some of them seem to forget that their child will grow up to be an autistic adult too and may be holding down a job, relationship etc but still desperately holding everything together.

Not that they’re not as valid, but that their experiences are extremely different. This shouldn’t need pointing out but it’s a frequent issue.

And it’s not that some parents forget that their children will one day be adults, but that their children likely won’t be managing either a job or a relationship.

Apparently the worst thing you can do is suggest that the person talking to you eloquently about autism is less severely affected than your child who can only request single tangible items using PECS, or diagnosed age 2 vs diagnosed in 30s / 40s. This isn’t an insult, it’s a statement of fact. Yes, you may mask, but many autistic children can’t mask because they don’t have the understanding.

And just because a child is non-verbal doesn’t mean they have a learning disability or low IQ. Communication impairments are part of autism - for some this is much more severe. This myth is why so many autistic children end up in unsuitable schools for PMLD.

This. It is insulting when a person diagnosed in their 30's attempts to compare their autism with a child with a prognosis of life long care requirements

Spot on sinkgirl.

The comments about adult hood show exactly what many parents face who know that because of how their child is impacted by autism that level of independence will never be a possibility for them.

Ds falls into the group that may manage some sort of highly supported “independence” when he reaches adulthood but he will be in no way fully independent. I know from your posts previously sinkgirl that we are both in different positions for what we are looking at moving forward for our children but we are both in a position where we know we will have to fight for everything they need for a long time so to then have people trying to downplay those concerns by comparing to their own experiences where they have been in a position to live a pretty independent life hurts.

It’s like when we see people on TV who are autistic and have managed to achieve fantastic things (often against the odds and with a lot of work) but then that is painted as some sort of gold standard that everyone who is diagnosed with autism should be able to reach when for a very large proportion nowhere near that will be achievable.

"It's just a different way of thinking"

Some of the people with autism I work with, it really isn't, it severly restricts their lives.

It doesn't just have to be I'll informed in that respect.
My half brother is autistic and is in his teens, currently going through the paediatrician for my young son who is showing many traits of autism, but most are very different from my half brothers, so I get alot of "hes nothing like X, so he can't be autistic". No matter how many times I say I have no clue and I'm just following the professionals advice and trying to make my sons life easier no matter what his future holds and I don't want to discuss it further.

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.

Yanbu OP. But to be honest I was massively ignorant abut autism until my son was diagnosed. Everyone could do with better education regarding neuro diversity. It's ironic that neuro typical people go on about how autistic people lack empathy, when they seem unable to show them any empathy themselves.

@Sirzy

Spot on sinkgirl.

The comments about adult hood show exactly what many parents face who know that because of how their child is impacted by autism that level of independence will never be a possibility for them.

Ds falls into the group that may manage some sort of highly supported “independence” when he reaches adulthood but he will be in no way fully independent. I know from your posts previously sinkgirl that we are both in different positions for what we are looking at moving forward for our children but we are both in a position where we know we will have to fight for everything they need for a long time so to then have people trying to downplay those concerns by comparing to their own experiences where they have been in a position to live a pretty independent life hurts.

It’s like when we see people on TV who are autistic and have managed to achieve fantastic things (often against the odds and with a lot of work) but then that is painted as some sort of gold standard that everyone who is diagnosed with autism should be able to reach when for a very large proportion nowhere near that will be achievable.

Fully agree with everything you’ve said Sirzy.

I obviously don’t know what the future holds for my twins as they are young still, but one can have a good guess. They both show they’re very bright, one is even starting to read and spell, but no attempts at speech from him at all. Certainly their experience is utterly different from many of the people who tell me it’s offensive to say my children are disabled.

@FoxyTheFox

90% of the time these kids are not acting out deliberately - they’re just confused and overwhelmed. (The 10% is because they’re still kids who will get in your last nerve if given the opportunity).

When either of my DS' are confused or overwhelmed (or both) they will act in a way that could be viewed as "naughty". This could be things like hyperactive behaviour, excessive silliness, shouting, ignoring me, back answering, disrespectful or silly comments (e.g., repeating a phrase over and over or telling people speaking to shut up), aggression (DS worked out that misbehave = go home so went through a stage of thumping his brother whenever he was overwhelmed and wanted to leave any given location), etc. Based on the way they're acting and their reactions to us we can tell around 95% of the time whether they're acting this way due to an unmet need or a need they're (poorly) trying to communicate or whether it's down to them deciding to behave badly because they're kids. If they're acting that way due to a need then we meet it and it resolves the issue, if its due to them misbehaving then there are consequences depending on what they're doing however those consequences might not be the same as what a parent of NT children might use - for example, DS is happy as a pig in shit if he gets grounded, he doesn't have to deal with people and can wear no trousers so grounding isn't a punishment to him but if I was to take away his dinosaurs.... Consequences might also not be issued at the time of the behaviour, as another example if DS is close to meltdown or shutdown and hits out then I would remove him but wouldn't necessarily discuss the behaviour there and then as the priority would be to get him away and help him to regulate/calm down, the discussion around what happened would come afterwards whereas sometimes othet parents (particularly if they've witnessed a less than desirable behaviour) seem to expect there to be a visible and immediate telling off so that they can see its been done.

I agree with your post entirely. My DD (5) has autism. If she is 'in the zone' as we call it and acting out as a result there is absolutely zero point in trying to discipline her in the moment. She's not capable of processing it or acting on what we're saying to her. The priority at that time is to regulate her, bring her back from the tipping point and when she is then calm and regulated we discuss the behaviour. A firm telling off in that moment would be inappropriate, unfair and not in anyone's bests interests

But yes, other people who witness this can - and do - misconstrue us working with her to calm her as soft and shitty parenting. When actually it's quite the opposite.

Boundaries etc are even more important for children with ASD than NT children. For mine, they're vital and help her enormously.

One of the hardest things about having a child with ASD I have found (so far) is unpicking the 'normal' naughtiness of a 5 year old (because all 5 year olds are naughty sometimes, NT or not) from the behaviour caused by her ASD. It's not always clear and it's hard. As she gets older it's becoming easier though.

I agree with @SinkGirl and @Sirzy ‘s posts. I think they’ve explained the situation for less articulate more classic Autistics well. It’s almost impossible to see what is happening in the autistic community now. You cannot see what provision there is or who is benefiting from it, you cannot track outcomes, and you definitely have no insight into funding. The result in my area is no outside clubs/leisure, minimal schooling, and extremely convoluted access to healthcare.

'My next door neighbour's son is autistic and he's nothing like him.' is just as bad as 'He doesn't look autistic.'
We don't say 'My next door neighbour's child has asthma and your is nothing like him.'

I worry constantly about how my dd will cope when she is older with being independent but maybe she will surprise me.

@SinkGirl

But there does seem to be an anger/ frustration from others quick to tell autistic adults that their experiences are not as valid as their child’s because they seemingly manage easier with things. Some of them seem to forget that their child will grow up to be an autistic adult too and may be holding down a job, relationship etc but still desperately holding everything together.

Not that they’re not as valid, but that their experiences are extremely different. This shouldn’t need pointing out but it’s a frequent issue.

And it’s not that some parents forget that their children will one day be adults, but that their children likely won’t be managing either a job or a relationship.

Apparently the worst thing you can do is suggest that the person talking to you eloquently about autism is less severely affected than your child who can only request single tangible items using PECS, or diagnosed age 2 vs diagnosed in 30s / 40s. This isn’t an insult, it’s a statement of fact. Yes, you may mask, but many autistic children can’t mask because they don’t have the understanding.

And just because a child is non-verbal doesn’t mean they have a learning disability or low IQ. Communication impairments are part of autism - for some this is much more severe. This myth is why so many autistic children end up in unsuitable schools for PMLD.

100% this. My adult child needs 24/7 support. It’s never ending. He cannot be left alone at all, ever. He cannot communicate very well, he has very little understanding. The autism we experience is completely different. My son uses the internet to watch Thomas or the credits of programs.

Whilst I appreciate autism is a spectrum it’s infuriating when adults with autism who live a relatively typical life with spouses and children, that can log on to a computer and have these conversations tell me I’m doing everything wrong or that I don’t understand my own child. Honestly I just scroll on past now. It’s like day and night.

In my experience there are two very distinct subsets of autistic people: those with social anxiety, and those with a complete lack of social awareness. Like being hypersensitive and hyposensitive to sensory stimulation. My twins are hyposensitive to everything - language, social skills, sensory input.

Most of the autistic adults I speak to are they exact opposite - eye contact, like sensory input, is painful and distressing. So they’ll say things like it’s abusive to encourage eye contact, or do hand over hand to teach new skills. Whereas for children like mine, they don’t find eye contact distressing, they are just oblivious - when you do encourage more eye contact, they seek it out on purpose because they are suddenly much more aware of what you’re doing and saying. My two seek out hand over hand support because they want to do things, they just can’t do them. It’s not forcing at all, my hand is grabbed 100 times a day to help with things. Then they learn to do them independently.

A lot of the skills that my twins need extensive support to learn are taken for granted by those who have very different needs. And I am sure they would not be happy living with no understanding of language, no way to communicate, reliant on nappies etc.

My two seek out hand over hand support because they want to do things, they just can’t do them. It’s not forcing at all, my hand is grabbed 100 times a day to help with things. Then they learn to do them independently. this was my ds

@SinkGirl - thats really interesting. I flinch when an autistic child at school is encouraged to eye contact because i know my son hates it. But now i know yours likes it i will stop flinching as the child in question is basically much less aware of things than my son.

My son isnt severe as he can speak and can use a toilet which are so significant for indepenence, but its not mild either as he cant even manage in a special school with 1:1 support.

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.

thats really interesting. I flinch when an autistic child at school is encouraged to eye contact because i know my son hates it. But now i know yours likes it i will stop flinching as the child in question is basically much less aware of things than my son.

I don't think you need to be 'less aware' to not have problems with eye contact though, it's just that everyone's different. My DS has an ASD diagnosis but no ID. He has absolutely no issues with eye contact. He also tells us that snuggles keep him sane.

@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.

Oh that's what DS does- looks at the mouth. i have just realised. I never twigged.

(That might sound stupid, but when you have 12 years of living with what you live with, you just absorb it - coping mechanisms. I never put an identifying tag to it, if that makes sense. It's like how I narrate everything about what will happen to DS in advance. So for example i will say ' we will go to Aldi. i have 4 things to pick up. I might also look down the Aisle of Impulsive Purchases. Then we will go straight home and you can be on minecraft and I will cook you dinner. Dinner will be at 6.30). I always did it automatically. 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.