Some comments on “autism martyr parents” / why we need to stand up to big media companies & tell them this type of content is unacceptable. Meanwhile autistic people’s voices are almost never heard over the non-autistics speaking over us.
You can find them in “Autism Mommy Facebook Groups”, blog pages, and even writing books about how their “lives are heavily burdened by their autistic children”. You may have encountered them and not even know it. What is an autism martyr parent?
Autism Martyr Parent – Typically a parent who is convinced autism is something that needs to be removed from their child. They may, incorrectly, believe that underneath their “broken autistic child” lies a “trapped normal child”. Their main mission is often “curing the child of their autism” or making their child appear “less autistic” and “more normal”.
One key feature of an AMP (Autism Martyr Parent) is that they use their child’s autism diagnosis to seek pity from others, building their entire identity around how their child being autistic has ruined their life.
Common “Martyr Mom” saying may include: “Love my kid, hate the autism.” “My child is too severe too”. . . ” “My child will never”. . . and “You’re not like my child!”
#AskingAutistics #neurodiversity #actuallyautistic
Oh, wow 😢😢😢 I’ve seen this so often.
I know right I was trying to write a book from an autistic point of view (I am autistic as well) all ic ould find was oh look at the celebrities often with things such as it came as no surprise written next to it and blogs about how I love my kid but I just cant cope with them and oh autistic parents deserve a medal this or my child has insert type of ASD here thats the whole reason i made my blog and I kid you not one of the first things was articles about how to COPE with autisim partners these are legitimate quotes from aspergers websites “from, the unusually smart to the profoundly disabled “they do indeed not get it”” they have specific intrests eg.maths science trains”
“the aspergers partner may abuse alcohol to lower inhibitions and feel more “normal” note the normal is in air quotes because poor little aspies will never be normal honestly sorry for my rant but it just angers me so much
oh and just to clarify I did go into rant mode there I do believe parents have a right to talk about their struggles its the sort of tone often in these articles were the parents seem to think they are doing the world a favour by dealing or cping with us you have to cope with any childs bad behaviour but autism child is always in the same sentence as cope or deal with or melt down
I have seen same reaction in some parents to other conditions classified as behavioral disorders, though less frequently than with autism. Think this adult “syndrome” may be made worse by prevalent medical diagnoses and approaches to care. Too much emphasis on illusion of a “normal” and failure to accept that a wide spectrum of functioning is all within normal human expression.
Good that you keep reminding folks of this variety.
This infuriates me. I once told off a parent who, when their child was being disruptive and disorderly while they did nothing (kid was hitting strangers HARD), that the child won’t stop because he’s autistic and doesn’t understand.
I told her that his autism doesn’t make him stupid and he can learn that hurting people, including strangers, was wrong. If she felt that he was stupid because of the autism, she was clearly too ignorant to be a parent.
I find this post so divisive. I have followed you for a long time but as a parent of two children with autism and a wife to an autistic husband I find this post very offensive and divisive. Parents have a safe much right to write about their lives wether their children have autism or not.
Excuse you, autistic people are human beings who have a right to not have their most private and embarrassing moments splashed across the internet for the world to see.
So if your logic says you can say or show whatever you want about your child, that means you don’t get to cry foul if your children took videos of you having sex and posting them on the internet so everybody can see your most private moments.
If you say THAT’S DIFFERENT….you can shut the hell up right now. It’s no different. Parents violate autistic peoples’ privacy for what? There’s nothing educational about watching a child smear poop or punch themselves in the face, and videos or detailed blog posts about such things should only be posted with their consent.
If they can’t communicate understandably enough to consent, then assume it’s a no and DON’T POST IT!!!
Wow, so simple.
It’s NOT about YOU, “mom”, it’s about the rights of autistic people to be treated like human beings and not pawns for attention.
Stop picking on her. You are being a bully. You have no idea what she has ever posted, or said. Yet you attacked. It is becoming clear this blog is not a safe place to discuss topics of autism. She is right. Parents have just as much right to talk about their lives whether or not their child/children have autism. No one is trying to get attention. I have only seen parents supporting other parents.
I’m sorry (not sorry) but his comment is totally right and relevant evenif it’s conveyed with anger. Calling him a bully is pretty weak argument from you and kind of dismissive (not surprised about that). The problem here is not about parents talking about their lives or not it’s the fact that allistic parents think it’s totally OK to speak over autistic people using the «autism parent» joker card as an excuse to do so.
WE autistics are the one who makes autism and it’s history not allistics.
Yes this blog isn’t a safe space to discuss autism by pleasing you allistic parents by policing our tone for your confort and pride (waht can you expect from a blog titled «Neurodivergent Rebel»? Obviously). It actually never had to be such a safe space as you imply. Advocacy and activism ISN’T about being polite or pleasing the dominant group because the said group was tough to be pleased. This is BS. Activism isn’t about expecting to hear good things about how «autism justice warrior parents are so great!» or «the NT-centric society is perfect». No it’s about expecting harsh criticism from people who are tired of being treated as if they were robots, insensitive beings, or lesser-than-nothing. People who are tired to be condencedly spoken over by people who are not autistic.
We are angry (and have the entire right to be) don’t expect us to police our tone for your confort and ego. NT are always peinted as victims and are most of the time golden-calved by pop media, especially under the appropriative term of «autism parents». Results: autistic lads açd adults are erased and OUR advocacy is hijacked only because people presume that NT should be better at leading a fight only because they are «valid» and us autistics cannot because we are «invalid» (presumed incompetence). Our youngest generation gets murdered by these «awsome autism warrior parents», but hey «It’s not a murder. It’s an act of compassion, totally understandable and the child is just a broken burden».
Like many autistic, I’m sick of this shit. I’m tired of people getting angry at us because we tell them that this is OUR fight OUR existence OUR neurology OUR history, not theirs.
If people are to sensitive to hear their system (which by the way always told them that because they are NTs they must be special, better thusbthey are «normal») being questionned, then IT IS THEIR PROBLEMS. Just deal with it.
#ActuallyAutistic
Am I talking over people with autism? Nope. I don’t write like that. And you coined the term “autism warrior parent” which is also not a nice thing to say. I support other parents. Other parents support me. With or without children with autism. That’s it.
Robyn: You calling him a “bully” is an attempt to silence, and yes – is talking over.
No one here coined the term “autism warrior parent”, btw. That’s something allistic parents have autistics have been calling themselves for YEARS.
It’s almost like Munchausens by Proxy, but where there is a facetious illness, there is actually something and tangible there. I know a person (use the term friend loosely) who has often used her autistic child to garner sympathy and attention. I’ve also seen adults who use their tangible mental illness as a way to get sympathy and attention (also using it as an excuse to misbehave).
This is where my problem lies with the autism diagnosis itself. While I completely understand where you’re coming from, I can also relate to parents who’s children are smearing feces all over the place and banging their heads against the wall.
I’m NEVER saying that autistic people are a drain, or that they should be eraticated. I am saying that we need better research, and more treatment options for our kids. My son’s autism doesn’t look anything like another person’s autism. So the idea of a spectrum is ultimately flawed.
And while there are a few parents who have made questionable statements, the vast majority are trying to spread awareness and acceptance. And they can’t do that from an autistic’s point of view. They can only speak their own truths. <3
Perhaps, then, it would behoove them to converse with autistic adults, who have been autistic children and have good ideas about how autistic children should be treated and cared for. That’s ultimately the core of the problem with autism awareness; the best research is to talk to the people who know best, but nobody seems to want to take that step.
I can only speak for myself, but I would love to learn from more autistic adults. They’re voices should be heard much louder.
But just like you said in one of your articles, nobody likes being talked down to. There’s a better way to educate the public. And it’s not divisive… It’s collaborative.
Please remember, we are just parents. And we’re learning as we go. Autism or no autism, parenting is hard to figure out. Let’s leave the name calling to the children.
Please don’t tone police marginalized people.
Why is it assumed that having a moan makes them martyrs or that they are even looking for sympathy. I talk about my kids all the time because I’m a stay at home mum and I have lots of stories about them. I talk to other autism parents and we learn from and support each other.
It is draining when you’re on 2 hours sleep a night, cleaning poo up from various surfaces twice a day, trying to get the right help for them (which is never easy and always a fight) stopping them injuring themselves, making sure they can’t get out of the house because of their lack of sense of danger etc etc.
Discussing this with other parents who are going through the same or who can offer tips is not looking for sympathy, it’s logical.
Not everyone is trying to cure their kid, they’re trying to find ways to make their lives better.
We don’t do these things I’ve mentioned for reward or kudos, we do it because we love our children just the way they are. We share our experiences so no one has to feel alone. Do you think that people with autism are the only ones who feel isolated or like no one gets them? Whole families are isolated and ignored because people don’t like what’s different and autism families ARE different. Different not less.
The problem is parent / caregiver voices are so prevalent that autistic people are pushed aside out of their own narrative.
Parents who detail a horrendous meltdown are called brave, while autistic people who feel the autistic person being written about is being humiliated get told to shut up and get lost when they protest the violation of privacy.
Your story is yours. Autistic peoples’ stories are theirs. Many moms confuse the two and that is where the problem lies.
Who then gives a voice to the voiceless if not the caregiver? I follow a few parent blogs and most of them talk about their children’s ups and downs with humour, respect and great admiration for how hard their children try, never claiming it’s them themselves who are achieving, celebrating every victory when a naysayer is proved wrong.
Maybe parents who do detail a horrendous meltdown are experiencing it for a first time, maybe it’s cathartic for them to talk about it, you can’t presume to know why it’s done.
Are we really humiliating our children? No we aren’t. If we don’t tell our stories then it goes underground and is hidden, don’t we all want the same thing? Acceptance for those who are different in whatever way. We shouldn’t be fighting each other we should be fighting for the right for everyone to be accepted and respected and have equal opportunities.
OK just because some are «voiceless» that we should take this opportunity to speak over them (while presuming that if he doesn’t speaks that means he has nothing to say). Excuse me, but there are other ways to communicate and ifn autistic don’t speaks, he can communicate by another mean. And should NEVER EVER be an excuse to as an «autism parent» to speak over him (most of the time by completly ignoring what autistic adults who are willing to help with good feedbacks have to say about it).
«Maybe parents who do detail a horrendous meltdown are experiencing it for a first time, maybe it’s cathartic for them to talk about it, you can’t presume to know why it’s done.»
Yeah cathartic indeed (roll my eyes),especially when you get to call your child burdensome and broken (even if he is standing near you, because he he doesn’t speaks means he’s not hearing what parents say, right?). Of course they don’t know why a meltdown happens, however ignorance is not an excuse to talk BS about your son, autism and as a matter of fact contribute to the harm done to the autistic community.
«Are we really humiliating our children? No we aren’t.» . OH YES YOU ARE. If you tel misconseptions about autism because of your own ignorance about autism you not only hurt and humiliate your child but WE autistics as a whole (most of us have been through the same way).
«We shouldn’t be fighting each other we should be fighting for the right for everyone to be accepted and respected and have equal opportunities.» An ridiculously facile and dismissive argument in complete denial of reality. Funny to see how an appeal to unity is commonly used by members of a dominant/privileged group (as much as an appeal to free speech btw) in order to dismiss, sillence or gaslight members of a minority denouncing an issue…
Of course it should be great to fight for unity, respect and acceptance, but this fight is already ruined by those who are doing it wrong but are believed to be right about it («cauze we’re NTs parents DUH!»). The worst things were sometimes done by people who pretended and wanted to wish the best about something/someone. Best intentions aren’t enough, there should be the best results. But unfortunatly when I witness all this gaslighting, erasure and tragedy speech over autism by non autistics, the best results/goals aren’t reached at all.
#ActuallyAutistic
Speaking for him to get what he needs is not speaking over him. Just because you share a diagnosis doesn’t mean you represent him and his views. You have no right to talk for all autistics either, you can talk for yourself just as I only talk to help my sons. . Your vitriol is astounding. Do you think the suffragette movement or the civil rights movement would have got anywhere without help from the majority?
I know I do the best for my kids, and that’s good enough for me.
To Spectrum are beautiful:
First of thanks for complementing my «vitriol».
Second of all you already implie I have no right to speak for all autistic as if I wasn’t already aware of thatwhile I never intended to think because I’m autistic my way of life should work upon every autistic… The problem is , it also never gives a reason to think an NT parent have the right either to speak for all neurodivergent children . Strange but most of the time I witnessed an non autistic person using the «you don’t speak for all autistics » argument is when an actual autistic complains about something problematic «Oh shut up you don’t speak fora autism you aren’t like my son».
If an non autistic relative speaks for him he should speak WITH HIM. That means he should find a common way of communication. Unfortunatly when (as you say) someone is «voiceless» this detail is seen as a general excuse to presume wrong things about this person and as a consequence have a complete misunderstanding about autism. When you speak for somebody then we should seek good information about autism through the life of autistic adults. Unfortunatly this advise is often ignored and parent end up with incorrect feed backs about autism.
If talking to autistic adults as much as possible to speak the best about our sons was actually the case then we would’nt be ending up with people saying that their son are broken or an embarrassment for themselves.
If this was the case we wouldn’t have family members or caregivers buying into a tragedy story and murdering autistics because they are autistics.
If more people decided to take in account our autistic background and experience to have a better view upon their autistic children then we wouldn’t have parents trying to defend other parents justifying their harmful words (even in dispair) toward autistics saying «it’s cathartic for them» (as this minimize dangerously an already big issue).
Great things to make assumptions about just because I’m autistic doesn’t makes me representative at all in order to tell me to shut up. However trying to ask advices and question ourselves about our vision of the world is more difficult if this was thecase then ou would’ve known why saying« it’s cathartic for them» talking about reaction. To meltdowns is harmful and minimize the danger of us being deshumanized. You might be a mother but for you as well as me you are not speaking for everyone on the spectrum just because you are a mum. Ask for advise toward autistic adults to have a general understanding of autism. We know autism because we live it each autistic person has something to ad to with their experiences. But don”t dismiss us even if we can be harsh.
Talking about the suffragetes or the CRM. It’s once agai st funny to see members of a dominent group diliberatly hijack these phenomenon only because they were percieved as «non violent» to justify our position and again dismiss a complain that wasn’t toned policed enough to be taken in account. What I know is that if a group succeds is not only because of the help of the majority but it comes with members of the said majority who gave up their pride and superiority feeling, question themselves and let the minorities take the lead of a fight. Unfortunatly speaking about autism this isn’t the case at all people who are not autistics are in command leading the wrong fights (vaccins, illness, ABA and other abusive therapies) leaving us autistic clueless and infantilized.
So you know what is best for your kids? Good then don’t minimize «tragedic» and deshumanizing reactions from other autism moms next time.
It’s great to wish the best about someone but when it’s easier said than done that’s another story.
My vitriol might be astounding (once again thanks for the compliment👍) but if your core argument resolves around your disgust about what an autistic says (which happens a lot to many non autistic parents who just never get the point) then you missed the point as well.
He literally has no voice. I interpret for him. Maybe I should have phrased it that way.
I understood he is voiceless. But that doen’t mean there is nothing to communicate at allal. Way too many people presume incompetence based on these details. As much as books aren’t the sole way of transmiting knowledge and learning, voice isn’t the sole way to communicate. I would advise to use a laptop or a tablette at least for a start. Typing is a good alternative. There could also be sign language as well or pictures.
Alternatives should always be considered Even if by society’s standarts it is viewed as shamfull or «less» to not go by the casual ways.
Not to mention that sometimes if there actually is an ability for vocal communication with some autistics it can take longer to learn. However voiced speech shouldn’t always be expect as every autistic’s way of communicate/convey things.
We use pecs, sign, various squeals and body language etc. Alphabet boards. Unfortunately not everyone, in fact hardly anyone outside the community knows these forms. I’ve been a mum for 25 years 20 of them after his diagnosis, which back then was a fight to get but without the diagnosis you can’t get the help or therapies. I think we have both took umbridge and felt we both had to defend our corner. For my part im sorry if you think I was belittling you. I have made other comments on this blog about how reading about autism from autistics helps me better understand my own children. Reading other parents blogs helps me deal with my feelings. I see it as a win win. Unfortunately not everyone does
I see this a lot. I can’t begin to imagine saying my child has ruined my life. While my son is medicated for adhd, I still here that “it can be cured with better parenting” or “you need to train him better”. I can only guess at the frustration. You’re doing a great job keeping people informed! Thank you!
I would recommend your child to perhaps join an autistic club with autistic from all ages in order for him to make friends. (For me it was easier for making friend in an autistic space than somewhere else). Having neurpdivergent contacts would be valuable, for your son I think. Especially if he have someone with a similar background and story to relate to. (I experience this right now and it works) 😉
Thank you! I’m part of an online support group but I hadn’t even thought about trying to find an actual play group
That might be, because such a play group is unfortunatly non existent ar at best extremelly rare. I only can idealize it. But If there is one somewhere, that would be a good thing in my opinion to give your child (for the best at early ages) a sense of community provided by a neurodivergent circle. The sad thing (that is really common to us autistics )is that we nearly always lack the benefits that the «group» phenomenon can provide to us. Things like sense of safety, friendship, solidarity (actually a lot of us never experienced solidarity or had the chance to make others benefit from it😔).
Other things to gain is self confidence. Thanks to the «group» thing your child might have a better way to learn to accept or even express freely his autistic self. Because others won’t judge him on his «quirks» he would probably star to feel safe and trustbthem to start stimming without being ashamed, and stop repressing his self for the sake of others comfort.
An other cool stuff about this is the «strengh of numbers». Most of us autistic (and thats reallh sad) are envovling for most of our lives like «lone wolves» as if there is only the sole autistic boy in the classroom (not two or three) competly isolated. «strengh by numbers» is not in my opinion a detail to neglect. The more autistics there is in a group of friends the best the sense of safety and confort is settled. A friend can look after your son and protect him if he is assaulted and gets heklp from other members of the friend group to have a better defence and eventually your son would help in return his friends someday.
I truely believe that age doesn’t matter as long as the relationship is valuable and rich. That’s why I would’nt hesitate if I was you to introduce your son to an autistic adult (who likes and understands autistic children), if you have one you can trust in your circle of contacts and friend. What about an autistic godfather (if «VACANCY» of course 😉).
Our area in Virginia has a really active autistic and autism family community. There are playgroups, workshops, social clubs, and game nights. We’ve also been working with local businesses to operate extra hours for our friends with sensory issues. It’s been really successful. It’s great to see everyone together having fun and learning.
To be quite honest, your posts about autism parents offend me. I see a lot of fellow autism parents on here, commenting – so they follow you and you must follow them. I guess by posting these kind of posts that you do not support them, us. I read their blogs as well, and have never heard any of us say the things you continuously associate with autism parents. You spread this negativity and make it hard for us to go out in the world to even say we are an autism parent.
If we do, we are faced with eye rolls. Instead, I guess some turn to support groups. We turned to blogging. I myself am not good at speaking. So I write. Writing makes me feel good. And I found other autism parents that understand part of my story and I understand parts of theirs. I agree with everything they say here. We are in a different situation than you are, yes. We are parents, which we can all vouch, is a challenge. We are also autism parents – which is different – and we can’t talk about those differences with other parents of NT children. And the big thing is – if you want to know about my children’s autism, you will have to ask them, or for my youngest, you will have to ask me, his caregiver, as he is unable to. Another person with autism is just another person with autism that can tell you a whole lot about themselves – but not my children.
I guess I get frustrated because I looked at the autism community as a community. And posts like this, the ones that create an “us vs. them” mentality, openly putting people that are in a different situation down, is not something I support and I find offensive.
This is specifically about one type of parent. Not all parents of autistic children.
Thank you for your feedback – I really appreciate what you are saying. As an autism parent, I don’t always agree with every parents perspective. But I am not them and not standing in their shoes. I hope to find acceptance for people with autism. And in that process I have to accept every autism family is different, coming from a different place than I am. I may not share all of their feelings – but that’s okay. I feel we are a community, trying to work together. I get frustrated when I see the autism community working against itself. For me, I share our story. My kids are great. Whatever I do, write or say is in hopes to make their future brighter.
Your comments are completely offensive. You’re basically saying if some has an autistic child they’re immune to criticism. Autism Martyr Parents deserve criticism, they are not doing the best for their child, they are harming their child’s community in general, and many autistic adults individually.
We should not have to put up with non-autistic people dictating to us about what autism is, or how best to deal with things, we shouldn’t have to put up with abuse because we think a child’s meltdown should not be on you tube, or the subject of an article. We shouldn’t have to battle to be heard over people who nothing about autism except they are the parent of an autistic person.
Robyn,
This is gross. Why do you insist on tone policing and putting down marginalized people? Why do you think that marginalized people need to “support” the majority?
Also, why do you repeatedly use person first language when talking about autistics, and identity-first language when talking about the parents of autistics?
We are autistic, you are the parent of an autistic. You are NOT an “autism mom” – you don’t get to claim our identity as our own. Have some respect.
Forgot one thing – I can’t tell you how many times a professional has told me “He may never” when telling me about my son. If I were to say “he may never” to someone else, it would be because it was something I was told by a professional working with him. I awlays like to add to that sentence that there is always hope.
As the parent of a young child with brain trauma, we heard this many many times when she was a baby. It took six years but she is finally doing most of those ‘nevers’ now. Wholeheartedly agree with you. Theres always hope, and on top of that, more hope.
It’s almost as though instead of “he may never,” they should say, “it could take longer,” or something that is more positive and hopeful than “never.” I understand that is difficult, I can’t even think of a good replacement off hand, but “never” just sounds so discouraging. It’s amazing what impossible things a person can do when they hope for it.
Absolutely. I can’t think of anything in its place either other than an objective conversation, realistic, but objective. Giving false hope is not the same as just being ‘hopeful‘ and many doctors and therapists don’t quite have the knack for it. No one likes limits, least of all ones stamped or imposed upon us. There is always more we are all capable of. Or at least the hope for it.
Lmao so many parents upset that they’re not being centered in the narrative! Y’all are so hypocritical that it’s hilarious.
If that is what you got out of this discussion then you missed the point. The point is leave autism parents alone. We don’t want to be the center of anyone’s narrative. These posts, clearly labeled against autism parents, are hurtful.
This is specifically about one type of parent. Not all parents of autistic children.
You may have written this for one type of parent, but a lot of these comments are directed at all autism parents.
Exactly. That’s unfortunate. This attitude is also adopted by other dominante groups suchnas white people, heterosexuals, or males. When these aren’t at the center of this topic they always ask to get their centered spot back. Talking about education that raises you to make you feel above and special because you are the norm.
One of the most efficient experiment I’ve seen unmasking this behavior is Jane Elliott’s «Blue eyes vs Brown eyes» experiment. When you take away power from members of a dominante group and share it to a minority, the majority feels they have legitimacy to go back under the spotlights only because being a majority the world owe them this position and privileges. But when they get harshly called out on this behavior they become (very quickly) angry or defensive because their pride had been hurt.
https://m.youtube.com/watch?t=101s&v=k-S7XwlogdA
The same goes exactly the same for autistics x allistics when it comes to relation to power from one group above another. That’s just plain truth, but eventually some people would prefer lock themselves in denial because truth makes them uncomfortable.
thank you for that link! wow, she says it like it is… and I see how it applies here also. I went on to watch more recent interviews with Jane as well.
Well done Christa! 👏 your post successfully baited some comments (from «autism warrior parents») down there that actually proves your point and get us to realize how this is such a big problem to face forthe autistic community. Some of these comments are pretty disturbing even more disturbing if poorly filtered with politically correct vocabulary as if it makes their words more acceptable.
A lot of people seem to be missing the point to. The post (and relative comments) isn’t about all parents of autistic children/adults. It’s about the ones to use autism as an excuse to garner attention and pity from the masses. “My child is autistic, poor me,” vs. “My child is autistic, and that’s okay.” It’s the difference between standing beside their child or in front.
People with autism are still people. They just view and process the world a different way. They aren’t stupid. Ever.
OK just because some are «voiceless» that we should take this opportunity to speak over them (while presuming that if he doesn’t speaks that means he has nothing to say). Excuse me, but there are other ways to communicate and ifn autistic don’t speaks, he can communicate by another mean. And should NEVER EVER be an excuse to as an «autism parent» to speak over him (most of the time by completly ignoring what autistic adults who are willing to help with good feedbacks have to say about it).
«Maybe parents who do detail a horrendous meltdown are experiencing it for a first time, maybe it’s cathartic for them to talk about it, you can’t presume to know why it’s done.»
Yeah cathartic indeed (roll my eyes),especially when you get to call your child burdensome and broken (even if he is standing near you, because he he doesn’t speaks means he’s not hearing what parents say, right?). Of course they don’t know why a meltdown happens, however ignorance is not an excuse to talk BS about your son, autism and as a matter of fact contribute to the harm done to the autistic community.
«Are we really humiliating our children? No we aren’t.» . OH YES YOU ARE. If you tel misconseptions about autism because of your own ignorance about autism you not only hurt and humiliate your child but WE autistics as a whole (most of us have been through the same way).
«We shouldn’t be fighting each other we should be fighting for the right for everyone to be accepted and respected and have equal opportunities.» An ridiculously facile and dismissive argument in complete denial of reality. Funny to see how an appeal to unity is commonly used by members of a dominant/privileged group (as much as an appeal to free speech btw) in order to dismiss, sillence or gaslight members of a minority denouncing an issue…
Of course it should be great to fight for unity, respect and acceptance, but this fight is already ruined by those who are doing it wrong but are believed to be right about it («cauze we’re NTs parents DUH!»). The worst things were sometimes done by people who pretended and wanted to wish the best about something/someone. Best intentions aren’t enough, there should be the best results. But unfortunatly when I witness all this gaslighting, erasure and tragedy speech over autism by non autistics, the best results/goals aren’t reached at all.
#ActuallyAutistic
For some obscure reason, it is still not a reflex for many to go to the source (people who are actually autistic) when it comes to autism, and autistic people have every right to advocate for this.
I also want to support autistic voices, as I support my child’s, so I was surprised to read belittling comments about autistic parents… who of course are just as different as autistic people are, or as anyone else is, and it’s just as hurtful for us to read generalizations. I never met a parent who didn’t give every single drop of energy that that he/she had so that their child could florish, but even if that hadn’t been my experience, to me, bashing a behaviour is fine (and necessary at times), but bashing a person never is. No one can ever judge anyone else’s intentions or suffering, autistic or NT, and frankly, I don’t see any point to it. We can recognize someone’s suffering and advocate for what we think is right without having to belittle another person’s suffering. And I’m not sure anyone is making anything “all about them”, people just talk about their own feelings which is subjective by nature and limited, not a universal truth. Having a frank discussion on how frustrating and painful it is for autistic people to read about parents’ feelings of exhaustion or distress, because they feel their own feelings of exhaustion and distress are being overlooked while they are the first concerned, is really, really important. We need to have this conversation so we can evolve and make things better. Not withdrawing into our respective corners. If I have to choose a corner, then heck, I’ll take my son’s hand as well as my NT spouse’s and daughter’s and stay right there in the middle together.
I dont want to add to autistic suffering, or to parents suffering. I want to give my support and pull people who are crushed back up.
I hope everyone’s voice is welcome in the discussion, and I have no problem with having my parental voice being somewhere in the background while my son’s voice is upfront and center. We have different and complementary roles to play in this.
I thank Christa for clarifying that she’s against a specific type of behaviour (I think that’s what you mean by “a type of parent”). Keep writing, I love to read your perspectives on things.
I am a NT parent BTW (I think I wrote us autistic parents instead of us autism parents earlier)… To think that I keep telling my student interns to review their draft many times before submitting it!
I also think it’s a social ill that when you are vocal about any struggle, you are being selfish and claiming victimization. I think a lot of that is misunderstood from parents who are speaking out in certain ways because we forget and overlook the intense lonliness that can be felt when battling through a chronic illness of our children or struggles like austism that are also day in/day out. Sunrise to sunset. No breaks. It so often feels incredibly, incredibly lonely and that shouldn’t be taken as wanting a “spotlight” or for the focus to be on them. While sure, we have all unfortunately seen parents who do wager their children for attention, I think the overwhelming majority just needs to talk. Solidarity just for solidarity’s sake shoudn’t be misconstrued as demanding political correctness? There is always The Exception. In anything. But, it’s also okay to want a break in that lonliness or a break from the struggle, or to wish the best for our kids without meaning we’re wishing our kids were someone else less charmed. That being said I would doubt most parents are wanting attention as much as they are wanting to see their child not struggle. It’s all very lonely and talking about that is okay. Needing solidarity is not always being a martyr. But the exceptions give the rest a bad face as in anything. 😔
As the parent of a young autistic person I appreciate the above note. For me Its not talking about all parents and I don’t feel it challenges the when what and how of my choice to share narratives about my parenting or my young person’s experience
Reading comments from autism parents here it is really obvious that are missing CONTEXT. and that’s kind… look, the autism blogging community and Twitter community have been BLOWING UP the past week because of the actions of one specific autism martyr parent. I don’t follow forums, for all I know it’s blowing up there too.
So on the one hand, if you miss the context, you’re going to miss some of the meaning behind posts like this. Right now there is an autism martyr parent who is calling autistic activists liars, Russian trolls, Nazis, and harassing them after being asked to stop contacting them. The parent in question is doing this because some autistic folks got review copies of their upcoming book about BEING an autism parent and were appalled by what was described in the book.
Two takeaways:
If you were actually paying attention to what autistic people are saying and talking about, you’d probably already know this context. Maybe take this as a wake up call that you aren’t listening to autistic people as much as you think you are.
If you come to a post that defines a SPECIFIC TYPE OF AUTISM PARENT and get all butt hurt about how mean and divisive it is to attack autism parents that way… you may be the type of person this post is talking about.
I’m glad you explained that. I didn’t know, and I still don’t know the details, but it sounds preoccupying indeed. I am not on twitter and I don’t follow that many blogs or forums either. That doesn’t makes me someone uncaring. It just makes me someone who isn’t on twitter and doesn’t follow every blog.
I won’t speak for other parents, but for my part, I just want to be ally. My son can and does speak for himself. I started reading blogs to learn about other people’s perspectives and contribute to an exchange of ideas within a community of people who support autistic personal and professional fulfillment, and a more open society (everyone talks of diversity but unfortunately, neurdiversity isn’t that much on the radar…). I hope when my son gets older, we can read blogs together and discuss topics that are addressed there.
I spend my days sharing perspectives with people who come from different backgrounds and it’s always been very enriching, whether we agree or not. Problems appear when people don’t feel respected, when another judges their intentions or feelings from the outside. Autistic people have long suffered from this and it’s unacceptable. Parents will react just the same when someone judges them without actually being them, especially when they are at the end of their rope and are just barely keeping afloat. Reading things like “they’re faking their suffering to get this or that” upsets me. I’ve read that about autistics and NTs and it upsets me in all cases. We can’t (and shouldn’t) judge suffering from the outside, but we can certainly attack individual behaviours and society’s tendancies that are appalling and must change.
A parent said here that talking to autistic bloggers had helped her understand things about autism from the inside and it was helpful for her family. I guess many parents felt that, inversely, sharing their thoughts, in addition to helping other parents, might also help autistic people understand some parental reactions that don’t make much sense to them. Some of those parental reactions don’t make much sense to me either (and when it comes to extended family, it’s even worse!). But I’m thinking maybe the time isn’t right and our voices are not necessarily welcomed now. Clearly frustration has been building up and maybe some wish to express their anger freely without hearing the points of view of people they feel have had enough of space to express themselves. We’re all getting defensive, it’s counter productive. I don’t want to make things worse, and I can respectfully withdraw.
Anyway, I’ve said my piece. Thanks for reading and I wish everyone well.
i am an autistic mother of an autistic child, and this atittude from some moms ( i wouldnt say its the majority, but they are loud) of martyrdom is very upseting and disrespectful.
its not that parenting a child doesnt have hard moments, but when you blame all on
autismand keep feeling sorry for yourself, you just drown in self-pity and isnt able to properly parent your child.it makes hard for us , autistics, been listened when all that is in the maisntream media are these stories.
i dont know why they think is somehow helpful to convience the word their kid is the worse burden on earth, but what they do just make a lot harder for their children to be included in society and treated with respect.
i just stoped going these school meetings of moms of autistic kids because it made me very upset of seen all those grown women complaining and crying about their child, like spoiled brats because they didnt get the child they wanted, and saying the are in
mourningfor theirlost dream child.i told them to stop treating their kids like changelings.
the worst day was when one mom came in crying and really distressed saying wanted kill her 5 year old son, because
that sick kid is ruining her lifeand other moms were likewe all fell like that sometimes...i was disgusted. her son is such a cutie, happy and smart boy that once told meyou know auntie? i really love airplanes....and i cant imagine why his mom would want see him dead.Some of the things you’re describing may have just been feeling overly comfortable in a group of people who may understand….I emphasize *OVERLY *! (The last one is horrendous btw) Its one thing to search for support, it’s another, like you said to dwell on the challenges in such a negative way because youre right, it absolutely is making it impossible for them to parent their kids in a healthy way…properly so they can thrive. I would have stopped going to those meetings as well. I can only imagine they were designed to inform and support one another, not to down our kids as having made our lives worse…so sad 😔
I’m the NT parent of a grown autistic woman (21 next month!) and I had a lot of struggles as she was growing up, but I just can’t wrap my head around someone who would see that as their child’s FAULT. My life has not been ruined by my daughter, it has been incredibly enriched. I’m so lucky to have her.
I don’t want to remove autism from my child. I embrace his autism. His differences. How he views the world and how the world sees him. In some ways, I find your post offensive. Some part of my mind converts into “typical neurotypical” thinking. I am trying to see the difference, the label to threw onto parents, when you don’t know what their struggle is with their child. You pointed a finger, secluded them to their own island, and bashed the ever loving crap out of them. As parents, if we expect to teach our non-verbal or verbal autism children to survive in this world, we have to teach and show compassion and INCLUSION. And inclusion doesn’t start with someone who says she doesn’t believe in assimilation, but assimilates other parents.
I’m going to going to elaborate as clearly as possible. The people who I am speaking about are abusing their children. I don’t care what their logic is CHILD ABUSE and EXPLOITATION can NEVER be acceptable. There is no excuse.
Hi Rebel: I PROMISE I’m not stalking you…was actually looking up a statistic and your blog came up. I’ve just read every single comment on this post and the sharp learning curve I’ve been on for about a week now (when I first started Twitter) has my brain trying to splatter all over the walls.
Like hashtags…had no clue #ActuallyAutistic was a space for ONLY actually autistic…I just copied what I saw. Figured it out, stopped using it. Didn’t figure out for a couple of days that a RT went to EVERYBODY. Oops, that doesn’t happen on Facebook!
Learned a new name/word I like better than NT (which smacks of divisiveness & superiority to me) and that is Allistic. Love it, dumping NT.
So I have a question that I’ve been wondering about. In the probably 30 – 40 first-person accounts I’ve read on Twitter from the Actually Autistic community (tweets, RTs, private message with one, back & forth between 2 asking for advice about my neighbor’s sister, etc.) I’ve not seen a single post from anyone about their OWN parents. May I ask why?
Maybe because we’re used to having our privacy violated, so people don’t want to violate their parent’s privacy. I figure I can’t tell my mom’s stories – although my dad has passed so maybe I can talk about him now.
I can only speak for myself, but I can tell you that being the parent of autistic child is the greatest blessing God has even given me, and a wonderful, humbling honor. I give thanks each day for my daughter – just the way she is. I wouldn’t want her any other way.
Knowing this makes me angry. I work with children on the spectrum in child care, and they are amazing individuals who want love and friendship as much as the next child but has a hard time building them. I know it can frustrating, but there are things available to help and also books that can give insight and strategies on behaviours.
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