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”

DS (26) would take a cure any day. Life has been a hard slog for him. He is incredibly resilient, but that has come at a cost.

I’m not sure I’d take a cure for my older boy with HFA - but I’d take it for the younger in a heartbeat.

I adore him, will advocate for him, look after him as long as I’m able. But he’s unlikely to live independently and that breaks my heart.

@FontyMcFontface

I would take a cure in a heartbeat for myself and for my high functioning child. The counter argument from the anti-cure people would be that the difficulties people experience are caused by concurrent learning disabilities, anxiety etc and not by autism per se, and they would argue that if I want to cure my child, I am rejecting who he is. I disagree. Autism prevents him from being who he is, and it’s the same for me. I would choose not to struggle.

Well the counter argument is bollocks, since autism exclusively can have very debilitating effects. There are some who are very eager to claim that autistic people who are non verbal, severely delayed must be intellectually impaired when that is absolutely not the case.

There are those who will object to any way of differentiating between the autism they have and the autism that those more severely affected have. Why is this? I don’t know, but it involves completely silencing and ignoring those who are too severely affected to mask, to speak, to work, etc. And apparently as parents we can’t talk for them either. But if I were diagnosed with autism tomorrow, I’d be more equipped to speak for all autistic people even though that diagnosis wouldn’t mean I had any clue what it’s like to be profoundly autistic.

It’s all ridiculous.

[quote lollipoprainbow]@Ericaequites I would take a cure in a heartbeat, I'm currently watching my dd sleeping feeling heartbroken that her life will be struggle. [/quote]
Exactly. As I'm struggling to get DS 9 outside on a beautiful day I just want a magic wand. I have 2 neuro-typical teens and it breaks my heart how different their childhood was - easy, breezy, full of fun and joy- compared to DS3 who i can see is ruled by huge emotions and a sea of anxiety. His life will always he hard, I just hope DH and I can always cope.

Re the cure thing, surely the reason people advocate for acceptance of neurodiversity is because there is no cure and no prospect of one? So the only thing that will make a practical difference is to try and make a world that is more accepting. I'd have taken a cure until a few years ago, but now I think this is who I am and who my ds is and I don't want us to be changed. I just want a world that accepts autism and other disabilities and differences.

But I am in that category that lots of you seem to resent - adult diagnosed woman who some of you seem to think have no struggles because I've got no LDs. This is a summary of my easy life: decades of depression, anxiety, multiple breakdowns and treatment (inpatient and outpatient), bullied at school and work, frequently suicidal, often not being able to speak for days at a time and not knowing why, many lost jobs, not having friends/social life, unable to work for long periods so couldn't support myself and have no savings, pension, etc, not understanding why I couldn't cope with certain sensory things, frequent physical pain from the stress (stomach pains, ulcer, migraines, etc). And most of that time I was told I'm lazy, stupid, weird, attention-seeking, sponging off the state/dh, etc because nobody I met had heard of adult women having autism. Then a struggle for a few years to get a diagnosis after my ds was diagnosed, and it's been a relief - same symptoms, still struggling, but at least I understand it much better now, and I'm glad my ds has this understanding from an early age. So I think I've got a right to look for positive things about autism and talk about the stuff I like about myself - special interests, hyper focus, logical thinking, etc. It would be a different history if I'd had LDs, but it doesn't mean I'm less autistic or have had it easy or should keep quiet.

I've met a lot of people online with similar histories since getting diagnosed. I haven't met any quirky geniuses who thought it would be cool to get an autism dx. Other autistic people are such an easy target, but it's not adult diagnosed autistics who are taking anything away from autistic kids or adults with LDs, it's the lack of support, understanding, representation, funding, etc for disability as a whole.

Certainly online, all I seem to see is “self-diagnosed” autistic people, and people diagnosed well into adulthood, who’ve often never had any mental health issues. These are the people preaching “autism activism”, but honestly I just have no idea what they’re talking about most of the time. I have consistently been talked down to, silenced, banned, because I don’t subscribe to their sparkly shiny view of autism. And often their hatred of the parents of autistic kids is horrific. Most parents are just trying to do the best thing for their kids, just like every parent, no need to be nasty.

Totally agree. I also feel like I’m not allowed to feel sad for my child, or wonder what life would be like if he wasn’t autistic. I see how much he struggles and how much it affects the mental health of me and his sibling but no life is supposed to be shiny and full of rainbows. Who else is supposed to speak up for my child apart from me? No else is going to fight for him!

There was a thread on here from a poster who’s child is severely autistic and needed full care and was crucified for suggesting she grieves for the child she thought she was going to have. It was just awful.

Just because a child is more severely impacted by the social and communication aspects of ASD doesn’t mean they have learning disabilities. My twins who are 4 and non verbal - one of whom can already spell lots of words perfectly - were nearly placed in a school for profound and multiple learning disabilities where most secondary age pupils cannot spell four letter words, because of this assumption that non-verbal = low IQ. It’s not always the case and this is harmful to autistic children.

I don’t resent adults who are autistic and who have managed, even with great difficulty, to access an education, build personal relationships, have families, have jobs. I think it’s great that some autistic people have this experience.

What I do resent is people in that position speaking for children like mine despite living an entirely different life. That doesn’t mean that what you have experienced doesn’t matter or should be trivialised. You should have access to the support you need, children like mine should have access to the very different support they need. But there are many who seek to negate the experiences of children like mine, and to deny that the cause of their difficulties is autism.

After my twins were referred I realised there’s a strong chance I am autistic myself. I’ve experienced many of the same things you have, and life hasn’t been easy. But what I don’t do is think that my experiences of what’s likely autism, which have caused be lots of difficulties, bear any relation at all to the experiences of my children or those like them.

My children may never be able to communicate their thoughts, or even understand what autism is. I don’t know. I’m doing everything I can to get them the right support to give them the best chance. But if they can’t, their views will never be heard, so a movement which centres on autistic people talking about being autistic will necessarily exclude a big chunk of autistic people. Which would be one thing if this were acknowledged, rather than children like mine being dismissed as only being this way because of learning disabilities separate to autism, but that’s not what happens.

There are some who are very eager to claim that autistic people who are non verbal, severely delayed must be intellectually impaired when that is absolutely not the case. THIS

I have all but given up explaining that ds IS high functioning because he is intelligent but that no amount of intelligence can overcome his autism to allow him to function like a pseudo neurotypical any more than the average British child could survive in a totally different culture language, say if we dropped them without explanation into a Tibetan monastery.

I do appreciate what you're saying @SinkGirl and I hope my post didn't read as my trying to speak for others whose experiences I don't share. I just wanted to point out a different kind of experience that I think was being ignored in all the criticism of adult-diagnosed people.

I think the idea that late diagnosed/self diagnosed adults have anything like the level of need is utterly ridiculous and the fact that less able autistics are constantly being “othered” and dismissed as “learning disabled” is infuriating. Yes, we know that there are many in the autistic community who also struggle with LD, epilepsy, MH, and physical difficulties like hyper mobility and food intolerance but we also know that many non-verbal individuals do not have these comorbid conditions. Enormous numbers of people fail to even grasp that communication and IQ are not always connected.

Both of my DC are autistic. One is likely to be able to live a fairly typical life, the other is very unlikely to be independent. She is actually the most intelligent of the two but her ASD is far more profound than his. I do see one child as being more severely autistic than the other.

@Sendsystemsucks

Both of my DC are autistic. One is likely to be able to live a fairly typical life, the other is very unlikely to be independent. She is actually the most intelligent of the two but her ASD is far more profound than his. I do see one child as being more severely autistic than the other.

Because one IS more severely affected than the other, and it’s bloody ridiculous that you can’t openly say so.

My son has a visual impairment called optic nerve Hypoplasia which is another spectrum condition. Fortunately the impact on him seems to be limited to struggling with depth perception. Some children are completely blind.

I would never in a million years tell other parents whose children have no light perception bilaterally that their child’s ONH isn’t more severe than my son’s, it’s just different and actually ONH isn’t a disability anyway because my son just works around it. That would be a bloody horrific thing to say.

In fact I can’t think of any other condition where the severity of impact is such a taboo subject, and every attempt made by the medical profession to differentiate between level of impact is rejected. I think it’s shocking to be honest that a relatively small number of autistic people think that they can speak for every autistic person - and of course by that I mean the autistic people who do this, not the autistic people who openly state they don’t know what life is like for those with different needs.

Yes I agree @SinkGirl it's something that frustrates me on a daily basis

@SinkGirl

Just because a child is more severely impacted by the social and communication aspects of ASD doesn’t mean they have learning disabilities. My twins who are 4 and non verbal - one of whom can already spell lots of words perfectly - were nearly placed in a school for profound and multiple learning disabilities where most secondary age pupils cannot spell four letter words, because of this assumption that non-verbal = low IQ. It’s not always the case and this is harmful to autistic children.

I don’t resent adults who are autistic and who have managed, even with great difficulty, to access an education, build personal relationships, have families, have jobs. I think it’s great that some autistic people have this experience.

What I do resent is people in that position speaking for children like mine despite living an entirely different life. That doesn’t mean that what you have experienced doesn’t matter or should be trivialised. You should have access to the support you need, children like mine should have access to the very different support they need. But there are many who seek to negate the experiences of children like mine, and to deny that the cause of their difficulties is autism.

After my twins were referred I realised there’s a strong chance I am autistic myself. I’ve experienced many of the same things you have, and life hasn’t been easy. But what I don’t do is think that my experiences of what’s likely autism, which have caused be lots of difficulties, bear any relation at all to the experiences of my children or those like them.

My children may never be able to communicate their thoughts, or even understand what autism is. I don’t know. I’m doing everything I can to get them the right support to give them the best chance. But if they can’t, their views will never be heard, so a movement which centres on autistic people talking about being autistic will necessarily exclude a big chunk of autistic people. Which would be one thing if this were acknowledged, rather than children like mine being dismissed as only being this way because of learning disabilities separate to autism, but that’s not what happens.

I can completely see your point.

I wonder what the answer is though (apart from people being more considerate with their words and becoming better informed!). Because my 5 year old is diagnosed with exactly the same condition as yours and yet I wouldn't ever compare them. Their needs, 'symptoms' if that's the right word for it (it probably isn't) are entirely different.

I'm pondering aloud really but as we know autism is a huge spectrum, with masses of difference between individuals. I almost wonder if it's worth the medical community looking at the children across the spectrum and having different diagnoses depending on how they present. But then that's what they had before wasn't it, and they did away with it.

Yes, I think they probably should be / are in reality different conditions and when the genetic understanding is further advanced perhaps there will be different subtypes within the diagnosis. It’s very difficult to categorise because of the spiky profile element, but there are still people who are angry about the level 1-3 currently being used because they think it trivialises the impact for those at level 1. Yet the levels of support needed are different and it should be okay to say so.

@timeforanewnameagain because the vocal group of autistic people pressured for it to be removed. There absolutely should be recognition of severity

I think what is really needed is understanding of how every individual is impacted differently. Personally I think we can accept that some people with autism are much more severely impacted in certain areas than others without trying to create new boxes to pigeon hole into as I think that would just change the problem and make it much harder when people don’t fit those boxes.

This thread is quite upsetting. I haven't managed to read it all yet but it seems that every autistic person who has posted here has been shot down. Do you really think that autistic adults aren't aware that autism is a spectrum and impacts people in different ways? People should be allowed to express their opinions on their own medical condition and not told that it is offensive.

Unless I misunderstood the OP, it was about ignorant comments on autism, not a thread solely for NT parents of autistic children. Autistic adults will almost certainly have received most of the ignorant comments mentioned in the OP and many more.

It is a shame that people can't express their own, diverse experiences rather than being told merely articulating their lived experience is somehow negating the different experiences of others. One should also not forget that many adult autistics are also parents to autistic children so are best placed to see the difficulties from both sides so should be listened to.

@Sirzy

I think what is really needed is understanding of how every individual is impacted differently. Personally I think we can accept that some people with autism are much more severely impacted in certain areas than others without trying to create new boxes to pigeon hole into as I think that would just change the problem and make it much harder when people don’t fit those boxes.

There's a lot of ignorance in the general public as there is for more complex medical conditions but this is well understood by those in the community. To be lecturing autistics who've posted about their own condition is a bit embarrassing. Everybody knows about the "colour wheel", the spikes in profiles, the impacts of co-morbidities etc.

@Rahri as an autistic parent of two autistic children I do believe some are far more severely affected than others. Does being autistic myself validate my perspective?

My DD's autism is far more severe than DS's.

[quote Sendsystemsucks]@Rahri as an autistic parent of two autistic children I do believe some are far more severely affected than others. Does being autistic myself validate my perspective?

My DD's autism is far more severe than DS's.[/quote]
My post clearly stated that it's a spectrum with very different profiles that impacts people very differently. My whole point is that autistic people posting here don't need this explaining to them. So you're agreeing with me?

@Rahri

This thread is quite upsetting. I haven't managed to read it all yet but it seems that every autistic person who has posted here has been shot down. Do you really think that autistic adults aren't aware that autism is a spectrum and impacts people in different ways? People should be allowed to express their opinions on their own medical condition and not told that it is offensive.

Unless I misunderstood the OP, it was about ignorant comments on autism, not a thread solely for NT parents of autistic children. Autistic adults will almost certainly have received most of the ignorant comments mentioned in the OP and many more.

It is a shame that people can't express their own, diverse experiences rather than being told merely articulating their lived experience is somehow negating the different experiences of others. One should also not forget that many adult autistics are also parents to autistic children so are best placed to see the difficulties from both sides so should be listened to.

Thanks @Rahri. I'm glad someone has said this.

My post clearly stated that it's a spectrum with very different profiles that impacts people very differently. My whole point is that autistic people posting here don't need this explaining to them. So you're agreeing with me?

And yet the complaints here are about those autistic people who do deny the severe impact that autism can have, who try to blame it on something else and who exclude those who can’t represent themselves.

Where has anyone shot down an autistic person for saying what you’re saying?

Where has anyone here shot down a person for expressing their own experience and where has anyone said that doing so negates the experience of others? That isn’t what’s being spoken about.

I’ve been called an abusive, evil eugenicist who wishes my children were never born, just for expressing how challenging it is to have two children who can’t communicate their basic needs. I’ve been told that referring to my own children as disabled is offensive to all autistic people. I’ve been told that my children can’t just be autistic, they must also have low intelligence.

Who’s shooting down who? This is actually the first thread I’ve seen in a long time where people have expressed this without getting a lot of abuse, and where autistic adults have also had the opportunity to say that they are also distressed by these things.

I’ve been called an abusive, evil eugenicist who wishes my children were never born, just for expressing how challenging it is to have two children who can’t communicate their basic needs. I’ve been told that referring to my own children as disabled is offensive to all autistic people. I’ve been told that my children can’t just be autistic, they must also have low intelligence.

And where has anybody here said this?

And yet the complaints here are about those autistic people who do deny the severe impact that autism can have, who try to blame it on something else and who exclude those who can’t represent themselves.

Then why have several autistic posters been criticised when none of them said anything remotely of this nature?