Sharing this because it describes perfectly my experience as a school mum.
Pardon the occasional swearing in this article but it’s one I felt I had to share:
Feel free to read the post first or my thoughts first (I think it works either way). Here goes my thoughts anyway:
I don’t share a lot of my life with John. Even less than what I share about my kids. Not because my life is the most important – quite the opposite – my kids and my husband are the most important things on Earth to me. But rather I believe their lives are their story, to choose to share or not share as they wish, if and when they want to.
Plus, I try to avoid sharing anything that portrays anything about their autism or any other condition, in a negative light. Of course there are downsides to having autism – I know that first hand! But I don’t want people to see the tiny negative fraction of what having autism includes.
Anyway, the reason I want to share this article is because of the one frustration I have with John, and the link it has to one of the devastating misconceptions society has about autism.
From the article (about missed diagnoses in girls):
“One answer that has been floated in several circles is that we “miss” autistic girls and women in diagnosis because girls are taught and socialized, from birth, to perform emotional labor. When the diagnostic criteria for autism spectrum disorder still emphasize deficits in emotional labor, clinicians are looking for lack – not for difference, which is more likely to appear in girls who have been socialized to perform emotional-labor rituals without being given any insight as to their meaning or purpose.
(This, by the way, has nothing to do with whether girls are “innately better” at emotional labor than boys. It has everything to do with how both girls and boys are raised. Girls are expected to at least make the effort; boys are not. Girls, therefore, show up in clinicians’ offices making the effort; boys do not. While no studies exist yet, I suspect that a study of boys who are raised in households that demand more emotional labor from them also “fly under the radar” of diagnosis more easily than boys who are raised without such demands.)”
Even though I adore John, one of the frustrations I have is that he does meet the male autistic stereotype when it comes to deficits in “emotional labor” (see the article for the definition of that term), and that deficit is there not just when comparing him to a neurotypical man, but even when being compared to other autistic men.
It can be very frustrating. But while many women in autism partner support groups (groups for partners of autistic people) blame autism for these deficits in their spouse, I do not. For two reasons – it’s insulting to other people with autism, male and female, who choose to take on the equal or majority share of the emotional labour in a relationship. And it also gives these men an excuse to continue with refusing to take on a fair of the emotional labour – ie “oh they can’t help it, it’s just their autism”. It gives these men an excuse to never bother to start doing their fair share of the emotional labour.
It’s damaging to autistic people in general, and it’s damaging to both the autistic person and their partner (NT or AS) in these marriage.
So while I adore John, it can be tough at time doing the lion’s share of the emotional labour. While I don’t blame autism for it, I don’t even blame John much for it, but what I do blame is a society that tells autistic men that this kind of behaviour is acceptable. And sadly it’s not just society as a whole, but well meaning family, friends and non-autism-specialist professionals who buy into the whole “it’s not their fault, it’s autism’s fault” and tell these men their choice of emotional labour division in their relationships is “normal” for autistic men.
So I am sharing the link to this article, despite this post going against my general beliefs about sharing negatives about autism and my family. But I am very passionate about anything that sells aspies short. The belief that anyone with autism/aspergers/ASD/ASC/ whatever you want to call it, can not learn and grow and be a healthy equal partner in every way (including emotionally) in a relationship, damages us all – every aspie/autie, and every person (neurotypical or AS) who has been, is and will ever be in a relationship with an AS person.
Yes us aspies/auties might need to learn about emotional development and relationship “rules” in an explicit way (ie we may need some things put to us really bluntly), preferably as children (but sometimes as adults for those that were never taught bluntly as children), but every single one of us are capable of pulling our fair emotional share in a relationship. Of course, like any relationship, there may be times where one person is doing more emotionally than the other. There may even be relationships where due to other conditions, one person ends up doing more of the emotional workload (the only example I can think of at the moment is like when something bad happens, like a death of someone close to one member of the couple, or loss of a job, or a diagnosis of a serious health condition etc), but the point is, over the whole time of a relationship, emotional contributions should be roughly equal – and autism, and gender too, are never reasons for one person to opt out of their fair share of the emotional labour.
So every time a family, friend or “professional” excuses John’s deficits in emotional labour, they sell him short and they sell all AS people short. As I said, I love John and my occasional frustration with him slipping into the stereotype of the “asperger male” doesn’t mean I don’t love him. But when reading this article tonight, all my frustrations at the people who have failed both him and I and our children by discouraging him from growing out of that aspie male stereotype, have come to a head.
It’s because of my love for him, and because I have seen his mind and soul, I think he has nearly infinite capacity for growth as a human being. I actually think most people (AS or NT) have nearly infinite capacity for emotional growth if given the right support and encouragement. And all too often AS people are discouraged from growing emotionally.
I want Sammie to grow up in a world where her nearly infinite capacity for growth emotionally is recognised, where she doesn’t get told “oh you have autism, you’ll never grow emotionally beyond the emotional age of a neurotypical toddler” which is basically what people are saying when they are saying about AS men “oh he can’t help it, it’s just his autism”.
So it’s something I’m very passionate about changing about how autism is viewed in society, both by general society and by professionals. All of us aspies and auties have just as much capacity for emotional growth as a neurotypical person. For some of us, it may take longer, for others of us, it may require being very blunt and direct (but for some of us, it actually may not take longer, I should add), but ALL of us have the capacity to grow emotionally throughout our life, same as any neurotypical has the same capacity to grow emotionally. Ongoing emotional growth is a choice available to everyone, AS or NT.
Ultimately, I just want to say to society… stop selling us aspies and auties short!
Until next time….
A good description of “function” labels in Autism
Aspies are often labeled high functioning by default. Some people even seem to think it’s a compliment.
“You must be very high functioning. You don’t seem autistic.”
“Why, thank you. And you’re not especially ugly.”
Because, yeah . . . being told you’re “not that autistic” like it’s a good thing is hard to swallow.
Functioning Labels in Practice
Applying functioning labels to autistic people is problematic. Maybe an example will help illustrate why.
I’ll describe two autistic women, Mary and Joan. See if you can tell which one is high functioning and which one is low functioning:
Mary is a wife and mother. She’s been steadily employed since age 16, has a BA degree and runs her own small business. She exercises regularly and is health conscious. When her daughter was younger, she volunteered for parent committees, hosted sleepovers, coached softball and drove carpool. As the more detail-oriented spouse…
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This is something I’ve been thinking about every since I first heard this news. Right from the first news article, the media were trying to blame the children’s autism for their deaths rather than the parent that murdered them. The children’s autism is irrelevant! All children have issues, even neurotypical children. Verbal autistic children have issues, same as non-verbal autistic children. I’m sure this family did need a lot of help, I’m sure the mother was tired and stressed, especially with a husband who was frequently away. ….
But the irony is it was the father who killed them all! I have heard way too many people defend the father saying he was stressed at having two “disabled” children, etc – all the other ableist rubbish people use to defend murderers of disabled people. But the reality is, loving parents do not do what this man did to his family (except in cases of genuine psychoses, and genuinely psychotic people don’t set up elaborate murder plans like this man did).
This wasn’t about a stressed/depressed/whatever-lame-excuse man killing his disabled children – this was an evil man who killed his children out of selfishness and those children just happened to have autism.
I cannot understand how people can say what he did was understandable – it was his wife who was doing all the hard work with the children. And even then, it wouldn’t make it alright for her to have murdered them. This man killed his children either because he decided having children was too much hard work or because his wife wanted to take the children and leave, or both. The fact that the children had autism, just means they were more vulnerable and makes what he did to his family even worse.
And one of the biggest things that sticks in my mind is I am sure he did it because of domestic violence, because his wife was leaving. Why do I think that? Because murderers who have even an molecule of decency in them, would have left a note saying he was the one who did it, not his wife. Same as how I know the wife would not have been involved – she certainly wouldn’t have left one of the children to die alone. But to elaborately set up this plan, and to not leave a note, to let people think his wife was involved by not taking the credit/blame, it’s just one final act of spite and control by an evil man – and how even in death, victims are often still victimised whether it be innocent children being blamed for their deaths for having autism, or innocent women being blamed for their children’s murders because their cowardly abuser lets the world think it.
When are people going to wake up! Autism might have it’s own unique struggles (I can attest to that fact both personally and as a parent and as a partner), but autistic people can have amazing lives with the right support and right opportunities. Autism is not the tragedy that many people make it out to be. And even if it was, so what??? No one has the right to take away a disabled person’s life. It’s still murder – and even worse, it’s a hate crime because it targets someone’s life because of something they have no control over being.
TW – Homicide, filicide, family violence
Elisa and Martin died along with their parents and their family dog this week. Their murder was pre-meditated with a complicated system of gas bottles filtering a lethal gas through their ceiling.
As a parent of three children, the news of their death has hit me hard. Elisa and Martin’s faces on my phone, computer and TV are heartbreakingly beautiful in a way that all children are. They look happy, their young lives with so much potential. Just like my own children.
Their lives were taken from them, probably by
one of their parents their father. An unconscionable act of filicide. As a mother who watches my darlings sleep at night, their little chests rising and falling as proof they are alive and well, I can not ever ever understand or condone a parent killing their child. Australians usually respond to filicide with…
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I have often wondered how the myth that people with autism lack empathy got started. I can see sadly why it gets perpetuated, but cannot understand how it got started.
I know some people might find it offensive when I say I can why it gets perpetuated, so I will explain what I mean by that. The reason I can see why it gets perpetuated is because we live in a neurotypical world. We live in a society where “normal” is practically worshipped. Anything outside of the norm, anything other than “average”, anything that is “abnormal”, “different”, “unusual”, “unique”, etc is nearly always condemned, not celebrated.
My experience both personally and professionally, is that us aspies and auties, are not just empathetic, but usually hyperempathetic – but we just simply don’t express our empathy in the average, “normal”, neurotypical way. And to neurotypical people, that can appear that we lack empathy.
Then of course, throw in things like difficulty reading facial expressions, difficulties under social “rules”, and for some of us, face blindness as well, it can be very hard to show the “normal” neurotypical world just how much those of us with ASD care about others.
I can only speak for myself, not for every person with ASD out there (as the saying goes, “if you’ve met one person with autism, you’ve met one person with autism”), but others I have spoken to feel similar to what I’m going to share….
The reason for the title of my blog post tonight is I feel incredibly torn because I am starting to realise just how limited the numbers of hours in a day are. Now that I’m juggling a five day a week job, a teenager (I don’t think I need to even explain why that is time consuming!) who has issues that need extra support, a toddler who is very much displaying the early signs of ADHD, a husband who is also an aspie (who I adore but all relationships take time if they are to be good, and having a relationship between two aspies does seem to take extra time to work out good communication), plus a mountain of medical issues…. well anyway, I’ve come to realise, I cannot solve every problem in the world. I’m lucky if I can keep up with all the issues myself and my family face on a daily basis.
But I don’t want to give up speaking up about issues that are close to my heart and sharing the things I have gone through and currently going through and will go through in the future, in the hope that by sharing my experiences I can make a different to the lives of others. The problem I’ve realised is that I have more issues I’m passionate about than I have time to write about in as much detail as I would like. So that is why I’m torn.
When there are so many causes I want to fight for and make a difference to the world for those causes, how do I choose which ones to focus on? How do others who are passionate about making the world a better place choose which causes you put your time into, and which ones you let go to focus on the other causes you’re passionate about?
Anyway, so that’s what has been on my mind lately. I guess it’s not something that anyone else can work out my answer for me, but would love to hear other people’s thoughts on how they decide for themselves.
And that’s it for me today. Not a well written post, but something that was heavily on my mind.
Take care until next time….
Brilliant article I found on autism…
Forgive my language straight up, but to answer the above question – fucked if I know, for sure. But I’m going to talk about it anyway 🙂 Note: This topic seems to be going off in socia…
Yet again, apologies for the very long time since I wrote a personal post. I think early December was my last post. A lot has happened since then obviously. Some good, some bad, but going well now.
I didn’t get the job I was waiting to hear back from in December, but since then I’ve started a fantastic job. So I don’t regret not getting it. The one from last year, I wasn’t particularly interested in. When it comes to employment, for a while there, I kind of gave up on applying for work and just enjoyed being a stay at home mum with Rose (with some days in childcare because she is getting more and more a hyperactive toddler every day, and there are just some medical appointments I have that can’t be done with a toddler in tow).
But every time a job came up that was something I am passionate about or that piqued my interested or just the rare job where the pay was more than what childcare costs and minus the family payments we lose when we both work, I would still apply. Of course the main issue is that nearly every job I found that I could do with all my health issues, were jobs that I could only manage to do part time and the employers were only looking for full time staff. Sadly I missed out on a job I was really passionate about earlier this year because they were only looking for full time staff until at least next year.
I think I would have been devastated at the time except for the fact that I found what is now my current job. My current job actually isn’t in healthcare. It’s an industry I never thought I would apply for. At this stage I won’t share what it is I do as a girl has to have some secrets 😉 Nah… It’s mainly that I have and will continue to share very personal stuff in my life on this blog and it’s why I don’t use my family or friend’s real names, it’s why I avoid details about where we live, and somewhat avoid naming former employers I’ve dealt with.
And as much as I’d like to name some of the horror health organisations and other organisations I’ve dealt with in the past, most of them I won’t name specifically. There are some I have and will name, but most I won’t.
So I won’t be naming where I work, or even what industry I’m working in, but I will share that it’s not healthcare. The interesting thing about it, is that I was hired through a recruitment drive for people with aspergers.
I have recently been reading a few news articles in major newspapers about employers who run hiring programs for people with aspergers and much to my disappointment, even though the articles themselves were mainly positive, so many of the comments were extremely negative – both from neurotypical people and aspies themselves. Many of the NT commenters were highly critical of such programs because there is a feeling that the aspies who get these jobs are getting an unfair advantage, while a lot of the aspie commenters felt that employers were just doing it to take advantage of autistic people.
It’s something that I found very sad. My personal experience is that it has been neither. After what has been a difficult 12 months for me and my family (something I won’t go into in this post or I’ll be writing all night), starting my new job has been life changing. Even though the ridiculous cost of childcare means I’d actually be better off being a stay at home than working, at least until Rose starts school, for the first time since Sammie was born, I’ve been able to find a job that I can physically work five days a week. Not quite full time but close enough.
After having worked in this job for a few months now, I definitely don’t feel like we’ve been given an unfair advantage, but at the same time, we’re definitely not being taken advantage of either. For the first time in my life, I feel like my skills are being fully utilised, while at the same time, feeling like for the first time my skills are being recognised and rewarded.
To be honest, when I started to write this post of mine tonight, itdidn’t really have a theme other than to reassure my few readers that I am still alive and doing well. I always like to have a theme for my posts – call it an obsessive trait of wanting anything I write to have a useful meaning. But now that I have written it, I realised my post does have a theme, albeit unintentional.
The theme of my post tonight I realise is one of hope. Or at least I’d like to think it is. I’d like to reassure anyone reading my post that no matter what you’ve been through in life, or even what you are going through in life right now, that there is hope out there for your life to improve.
I’ve been through a lot in life – domestic violence, all sorts of abuse, severe depression, all the bullying and lost opportunities that go along with being “different” from “normal” because of my aspergers. But despite all of that, I have a husband and two kids who I adore, I have a job that inspires me, where I’m treated with respect and genuinely like all the people I work with, a job where I don’t have to explain my quirks, and where I’m not judged for my physical health issues (supported in taking time off for health reasons, not pushed beyond my physical capability to do my job, etc). And what’s more, I’m still doing work that fulfils my passion to do something that I feel genuinely makes a difference, and for the first time ever in a job, I feel like I’m doing something that is intellectually stimulating as well.
In fact it’s inspired me so much that I’m planning to return to university next year. I’m not sure if I’ll be accepted into the course I’ve applied for as I’m missing a key pre-requisite, but because I’m a mature age student with lots of other study and with lots of varied work and life experience, it’s looking promising. I’m hoping to have an answer within the next few weeks when early offers come out.
Of course I’m still a realist. There are some things in my life that aren’t perfect and enver will be. Since I posted last, my health continues to slowly get worse. I can’t remember if I shared it in December last year, but I had an operation to fix a wrist problem last year, and later this year I will having the same done again to my other wrist and this time also having some other surgery done to that arm at the same time. And at the moment, I’m also waiting on X-ray results on my left wrist after a fall a week ago (tripping on Rose’s things). I’m hoping it’s not broken, but at the same time, if it’s more ligament damage, it will probably a long time to heal and typing is painful – a lot more painful than I let on to anyone because I’m tired of having to explain to people (especially doctors!) how bad my various pains are.
But while pain is a frustrating daily occurrence that stops me from doing a lot of things I would like to do, the one thing it hasn’t stopped me from doing is living a meaningful life where I am happy. I don’t think I would ever end up describing my life as being “just normal” but for the first time in my life, I feel like overall, I am genuinely enjoying life. It’s not an easy life, especially health-wise, but I am enjoying life.
Anyway, I apologise for a post that has been a little bit aimless, but I mainly wanted to reassure people that I’m alive, I’m ok and I’m in a good place. I am super tired as I’m very much not used to working five days a week (for more than 4 weeks at a time anyway), so I’m not even sure my post has been anything other than a ramble, but I did want to reassure people that no matter how bad things are in your life right now, your future has hope.
Until I write again…. take care 🙂