I have to be honest here; the vast majority of parents aggravate me in ways that can't be healthy. By the same token, as do some of the autistic adults I've "met" online. Our shared diagnosis does not automatically enamour me to my fellow autists and, as much as I'd hoped to finally find a group of people I could connect with and find some mutual understanding, it simply isn't working out that way.
As a parent/step-parent of children on the spectrum, ranging from a non-verbal and... what's the politically correct term here? Severe?* Profound?* So flappy we have to make sure he's got air space lest he take off?* 6 year old to a highly talkative, very sociable and far less obviously affected 7 year old, with an echolalic 4 year old and speech/language delayed 5 year old somewhere in the middle, you'd assume finding parents in similar situations, with whom I could talk autism with, would be easy.
*Please note, these labels are simply a jesting/less serious way of pointing out the difference in development between the boys; L has a range of co-morbid conditions that would place him in the "severest" category in terms of medical diagnosis. We tend to steer away from functioning labels but in this instance, I was trying to make it clear that we experience the many variants of an autistic spectrum disorder, not just one "subset". As it stands, L needs the most additional help to cope in our world and is as yet unable to communicate basic needs to unfamiliar caregivers or more specific needs to familiar caregivers. Our other boys have different additional conditions that make them all extremely unique; not to mention the fact that their personalities are all different to begin with. Of course, they're all just as autistic as each other (or myself!).
Though there are a plethora of us (parents/caregivers) out there, on the boards and social media groups, almost all of the interactions I see between folk on there quite literally leave me with the urge to scream as loud and as long as physically possible. Thankfully for my family and neighbour's sake I've taken a major step back from the online world, barring use for research purposes of course.
From those who believe their child is a diseased burden who requires daily bleach enemas, to those who believe their child is a misunderstood genius who's behaviours should be accepted no matter how alarming, distressing or aggressive they are to other people (which includes others with additional needs) and every problem in between, no matter how bloody pedantic (I'm looking at you, identity-first vs person-first - how about we all just go with whatever the autistic person in question would prefer?), it's a minefield of delusion out there. Add in the parents who use their children as Like-Bait, entering either their child or themselves into beauty contests and using autism to gain sympathy and attention, and you're left with very little actual advice and support going on in these so called support groups.
*Please note, these labels are simply a jesting/less serious way of pointing out the difference in development between the boys; L has a range of co-morbid conditions that would place him in the "severest" category in terms of medical diagnosis. We tend to steer away from functioning labels but in this instance, I was trying to make it clear that we experience the many variants of an autistic spectrum disorder, not just one "subset". As it stands, L needs the most additional help to cope in our world and is as yet unable to communicate basic needs to unfamiliar caregivers or more specific needs to familiar caregivers. Our other boys have different additional conditions that make them all extremely unique; not to mention the fact that their personalities are all different to begin with. Of course, they're all just as autistic as each other (or myself!).
Though there are a plethora of us (parents/caregivers) out there, on the boards and social media groups, almost all of the interactions I see between folk on there quite literally leave me with the urge to scream as loud and as long as physically possible. Thankfully for my family and neighbour's sake I've taken a major step back from the online world, barring use for research purposes of course.
From those who believe their child is a diseased burden who requires daily bleach enemas, to those who believe their child is a misunderstood genius who's behaviours should be accepted no matter how alarming, distressing or aggressive they are to other people (which includes others with additional needs) and every problem in between, no matter how bloody pedantic (I'm looking at you, identity-first vs person-first - how about we all just go with whatever the autistic person in question would prefer?), it's a minefield of delusion out there. Add in the parents who use their children as Like-Bait, entering either their child or themselves into beauty contests and using autism to gain sympathy and attention, and you're left with very little actual advice and support going on in these so called support groups.
Considering my diagnosis highlights the difference in thought, specifically my "black and white thinking", compared to that of "typical" folk, it amazes me how so many allegedly "typical" people seem to see the world and it's many conundrums in an all or nothing, black and white way.
Of course there's only one cause for autism, and it's *insert cause of the month*.
Of course all autistic people should be called autistic (or vice versa, each person who has autism should be informing people they have autism).
Of course my child should never be corrected for his behaviours (or vice versa, of course my child should be constantly corrected, fuck self esteem).
Of course the reason my child didn't receive an invite to the party is because he's autistic and people just don't understand!
It couldn't be the multitude of other perfectly reasonable explanations, could it? It couldn't be a simple error in memory, or a lost invitation, or a limit on children, or simply that the child in question doesn't particularly get on with your child? Not because he's autistic, but because that's life. Not everyone can get on with everyone. Some people clash - children are NOT exempt from this. Who needs an entire class of friends, anyway? How many people from your early school years are you still close with? But I digress...
That's just a small taste of the frenzy of strong opinion and rigid thought occurring daily within the caregiver groups. Now let's move on to the (I must agree, far more rightfully outraged and generally more in the know) group, the autistic adults and young people (or those with autism, for those who like that) of the internet.
I feel some shame and sadness admitting this, as I'm overly aware I'm talking about people who most consider to have a disability, but a large percentage of this group have also set off triggers in my ever-ready to implode mind. As a parent, I understand the toll having any child attempt to rule your life, let alone one with various additional needs and the strongest will in the world to boot, can do to a person. As a daughter, I understand my parents were, at times, put through a living hell raising me. They had no answers or doctors to tell them what was different, just noncommittal ideas such as mood disorders or anxiety. They did the best they could, they made mistakes and, as a teenager, I held onto those mistakes. As a parent/young adult, I've let (most of them) go.
As a parent, particularly as a parent on the spectrum, I've made awful, lifetime of guilt inducing mistakes. Lots of them. People often ask me whether being autistic gives me a better handle on parenting autistic children. My answer is almost always the same; it means I understand where their behaviours come from and how they're feeling (most of the time) as I have the same mindset and many similar behaviours. My actual reaction, though? I always aim to be fair, calm and understanding. More often than I can bear, my reaction is stern, snappy or hysterical. Every day is a new day, a day I try to stay calm because that's what they need, and what I need. To that end, I understand when a parent of a child, whether said child is on the spectrum or not, has to vent to another person about their delightful wee beastie breaking the family dog or smearing on the TV again. I even understand when that parent shouts at the child, not because I agree the child should be shouted at or punished per se, but because it's an impossible ask to expect a human being to be calm and reasonable 24/7 in the face of a 5 year old expert in *psychological warfare.
*Note, this is intended as a joke; anyone seriously considering their 5 year old is a master manipulator or difficult for the sake of it probably needs to take a step outside, breathe some fresh air and screw that head back on properly ;) behaviour is communication, as they say!
So when I read posts from largely childless autistic people chastising parents and caregivers for needing space to vent about their life (considering most of those with this line of thinking find the child screaming their frustrations out acceptable, is it not the parents right to vent their emotions too?), or for admitting they lost it/punished unfairly, when all the experiences the accusers have are being the child, not the person with all the responsibility in the world on your shoulders, it angers me. I absolutely understand that it's so hard to fully comprehend feelings and situations that you personally haven't experienced yet for many people on the spectrum, so I get it. I get why you can't always see the struggle on this side, but it doesn't make it any easier to take.
As much as I love hearing the views and thoughts of my fellow autists, and as much as I agree with most of their points, how some of us (myself included) speak to others is creating just as much division as the "NT" caregivers' accusations that our ability to speak/communicate online makes our thoughts and ideas invalid and not pertinent to their "low functioning" child. When we expect each and every person to accept and love us for who we are, we seem to forget that the person who was rude or aggressive to us this morning may have their own battles, be it ASD or mental health or other neurological condition causing personality changes or aggressive behaviour. They could simply be anaemic and their body and mind worn out! But, instead of taking all this into account, we make the assumption that their reaction, or lack of reaction, is directly related to our neurological differences or behaviours, become flustered, righteous and angry at the lack of understanding and accommodations in the world, and begin using NT as some form of insult. Don't even get me started on those of us who feel we're better than others, that being born this way makes a person somehow superior to the regular masses - narcissism is an extremely unattractive trait and it's one of the ugliest mindsets I've come across in the community. Thankfully it seems to be a very small minority, and isn't limited to those on the spectrum; as mentioned above, some parents also seem to have an unhealthy idealist view of their child's neurology.
Believe me when I say, I do not tar all members of either group with the same brush, hence the use of terms like "most/many people". It's an opinion and therefore it's heavily influenced by my personal experiences. It is not fact, nor am I personally blaming any one person or group. I wish I could put out a broadcast to the entire community and find a way to explain that helps every single person understand each other, and each other's personal battles of the mind, each person's trigger points, each person's reasoning. I wish I could be more of what I seek; balanced and fair-minded and able.
This post has been quite an emotionally charged piece of writing and, as such, I rushed myself and neglected to mention the positives when I first wrote it out and pressed publish. I've edited to add the following:
In real life I've been lucky enough to find a number of wonderful people who've supported and advised me in times of need. None are perfect but their help and general presence in my life have been invaluable and I like to hope I've been there for them in the same way when they've needed it.
I'm certain there are many other people like this out there, somewhere. I believe, perhaps, they're more the silent type. Perhaps they avoid the social side of the internet, or limit themselves to reading and rarely responding. Perhaps they tried and gave up, seeing how large the problem is. Perhaps they're just getting along, living their lives quietly and shaking their heads whenever they happen across situations like those I see online. Perhaps there's a secret underground group filled with agreeable, balanced people and, one day, when I stop having temper tantrums over strangers on the internet, I'll get a letter with one of those neat wax seals and instructions on how to find the meet. Or perhaps I'm simply destined to alienate and be alienated.
Of course all autistic people should be called autistic (or vice versa, each person who has autism should be informing people they have autism).
Of course my child should never be corrected for his behaviours (or vice versa, of course my child should be constantly corrected, fuck self esteem).
Of course the reason my child didn't receive an invite to the party is because he's autistic and people just don't understand!
It couldn't be the multitude of other perfectly reasonable explanations, could it? It couldn't be a simple error in memory, or a lost invitation, or a limit on children, or simply that the child in question doesn't particularly get on with your child? Not because he's autistic, but because that's life. Not everyone can get on with everyone. Some people clash - children are NOT exempt from this. Who needs an entire class of friends, anyway? How many people from your early school years are you still close with? But I digress...
That's just a small taste of the frenzy of strong opinion and rigid thought occurring daily within the caregiver groups. Now let's move on to the (I must agree, far more rightfully outraged and generally more in the know) group, the autistic adults and young people (or those with autism, for those who like that) of the internet.
I feel some shame and sadness admitting this, as I'm overly aware I'm talking about people who most consider to have a disability, but a large percentage of this group have also set off triggers in my ever-ready to implode mind. As a parent, I understand the toll having any child attempt to rule your life, let alone one with various additional needs and the strongest will in the world to boot, can do to a person. As a daughter, I understand my parents were, at times, put through a living hell raising me. They had no answers or doctors to tell them what was different, just noncommittal ideas such as mood disorders or anxiety. They did the best they could, they made mistakes and, as a teenager, I held onto those mistakes. As a parent/young adult, I've let (most of them) go.
As a parent, particularly as a parent on the spectrum, I've made awful, lifetime of guilt inducing mistakes. Lots of them. People often ask me whether being autistic gives me a better handle on parenting autistic children. My answer is almost always the same; it means I understand where their behaviours come from and how they're feeling (most of the time) as I have the same mindset and many similar behaviours. My actual reaction, though? I always aim to be fair, calm and understanding. More often than I can bear, my reaction is stern, snappy or hysterical. Every day is a new day, a day I try to stay calm because that's what they need, and what I need. To that end, I understand when a parent of a child, whether said child is on the spectrum or not, has to vent to another person about their delightful wee beastie breaking the family dog or smearing on the TV again. I even understand when that parent shouts at the child, not because I agree the child should be shouted at or punished per se, but because it's an impossible ask to expect a human being to be calm and reasonable 24/7 in the face of a 5 year old expert in *psychological warfare.
*Note, this is intended as a joke; anyone seriously considering their 5 year old is a master manipulator or difficult for the sake of it probably needs to take a step outside, breathe some fresh air and screw that head back on properly ;) behaviour is communication, as they say!
So when I read posts from largely childless autistic people chastising parents and caregivers for needing space to vent about their life (considering most of those with this line of thinking find the child screaming their frustrations out acceptable, is it not the parents right to vent their emotions too?), or for admitting they lost it/punished unfairly, when all the experiences the accusers have are being the child, not the person with all the responsibility in the world on your shoulders, it angers me. I absolutely understand that it's so hard to fully comprehend feelings and situations that you personally haven't experienced yet for many people on the spectrum, so I get it. I get why you can't always see the struggle on this side, but it doesn't make it any easier to take.
As much as I love hearing the views and thoughts of my fellow autists, and as much as I agree with most of their points, how some of us (myself included) speak to others is creating just as much division as the "NT" caregivers' accusations that our ability to speak/communicate online makes our thoughts and ideas invalid and not pertinent to their "low functioning" child. When we expect each and every person to accept and love us for who we are, we seem to forget that the person who was rude or aggressive to us this morning may have their own battles, be it ASD or mental health or other neurological condition causing personality changes or aggressive behaviour. They could simply be anaemic and their body and mind worn out! But, instead of taking all this into account, we make the assumption that their reaction, or lack of reaction, is directly related to our neurological differences or behaviours, become flustered, righteous and angry at the lack of understanding and accommodations in the world, and begin using NT as some form of insult. Don't even get me started on those of us who feel we're better than others, that being born this way makes a person somehow superior to the regular masses - narcissism is an extremely unattractive trait and it's one of the ugliest mindsets I've come across in the community. Thankfully it seems to be a very small minority, and isn't limited to those on the spectrum; as mentioned above, some parents also seem to have an unhealthy idealist view of their child's neurology.
Believe me when I say, I do not tar all members of either group with the same brush, hence the use of terms like "most/many people". It's an opinion and therefore it's heavily influenced by my personal experiences. It is not fact, nor am I personally blaming any one person or group. I wish I could put out a broadcast to the entire community and find a way to explain that helps every single person understand each other, and each other's personal battles of the mind, each person's trigger points, each person's reasoning. I wish I could be more of what I seek; balanced and fair-minded and able.
This post has been quite an emotionally charged piece of writing and, as such, I rushed myself and neglected to mention the positives when I first wrote it out and pressed publish. I've edited to add the following:
In real life I've been lucky enough to find a number of wonderful people who've supported and advised me in times of need. None are perfect but their help and general presence in my life have been invaluable and I like to hope I've been there for them in the same way when they've needed it.
I'm certain there are many other people like this out there, somewhere. I believe, perhaps, they're more the silent type. Perhaps they avoid the social side of the internet, or limit themselves to reading and rarely responding. Perhaps they tried and gave up, seeing how large the problem is. Perhaps they're just getting along, living their lives quietly and shaking their heads whenever they happen across situations like those I see online. Perhaps there's a secret underground group filled with agreeable, balanced people and, one day, when I stop having temper tantrums over strangers on the internet, I'll get a letter with one of those neat wax seals and instructions on how to find the meet. Or perhaps I'm simply destined to alienate and be alienated.
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| Image courtesy of The Sum of All Affections |
Revision of Division of the Autism Community (love that title):
Now well into 2017, I've recently been given pause for thought and have decided to revise some earlier statements; some because they were based on a perspective twisted by a negative outlook at the time of writing and some simply because the terms were deemed inappropriate or offensive by some members of the community and I respect their feelings enough to alter the text. I know it's hard to convey tone at the best of times for some of us; the internet only adds yet another barrier. I'd like to thank a fellow advocate for pointing out some of my more obvious f*ck ups and highlighting areas that he deemed triggering and insensitive, albeit not necessarily in the kindest of manners but as honest as ever.
I originally worded things quite poorly, particularly in terms of how large the scale of the problem I'm talking about is. At the time, my negative thinking/outlook lead to some very concrete, black and white thoughts. I tried to ease it off by using the words "many" and "majority" but in fact, it's a minority I'm speaking of. The large majority of autistic people I've met in real life have been fantastic people; same goes for the online community. That being said, some of the LOUDEST in the online community can be somewhat aggressive if not cruel in their deliveries and have left people (including fellow autists, some of whom have spoken up since I first shared this post) devastated in the process.
Now, I know bluntness is an issue for many (myself included) but I believe that with mindfulness and self awareness comes better prospectives for anyone hoping to gain listeners and share their knowledge and understanding, along with personal satisfaction that you've done everything within your power to do the right thing, regardless of the outcome. I believe that the forceful nature of certain individuals (who may be a minority but are many the numbers add together) are doing the cause more harm than good in some instances.
We all have bad days, we're all grasping onto our last spoons and some days we have none spare. It's understandable and it's almost expected for you to lose your sh*t once in a while; whether you're on the spectrum or not. We all have our limit. Sometimes we may go weeks or months stuck in the same fog; snappy replies and emotional reactivity levels at an all time high for continuous periods. Sometimes it might come out of nowhere and surprise you. It'll happen; if it hasn't already it's bound to and if not, you're a lucky sod :)
When that happens, we can only hope that the people around us (virtually or in reality) already know from past experience that we're not the sum of our off days or our, at times, difficult behaviour. We rely on the idea that the positive energy we bring most of the time, the support we offer and the good we do is enough to keep people from walking away when the going gets tough. As harsh as it is, a hand that continuously gets bitten will eventually stop feeding us, so we know in our hearts that people need those good days to balance out the damage inflicted; perhaps it's untrue and perhaps it isn't, but it's what we believe (or at least, it's what runs through my head as I agonise over whether they'll forgive me, this time; I certainly can't speak for others but like to assume I'm not alone in this painful but logical process).
The problems arise when it's nothing but anger, threats and insults being unleashed. When there's only darkness and harsh truths and no remorse let alone compassion or understanding. If that shoe fits but makes you uncomfortable, then perhaps it's time to take it off. If it's inapplicable, if you know you bring light to peoples lives in some way, any way, if you try to keep your mind open as and when possible, then you know you're trying and you know these words don't apply to you.
The second thing I'd like to address in this revision is the wording around my description of young children. As was pointed out in the comments section, both the terms "feral wee beastie" and "5 year old expert in psychological warfare" were pointed out as being insensitive in nature. I understand that the term feral may have very negative meaning to some, so I'm more than happy to swap it out for something with less controversy surrounding it. However, I'd like to take this opportunity to explain it's a term I've used for as long as I can remember; a term of endearment I use for children of all neurotypes and that has absolutely nothing to do with autism or a lack thereof. While on the subject, I'd like to clear up that the Feral One's nickname has nothing to do with his neurology and everything to do with his personality, interests and our family's personal sense of humour. As a young infant he wore animal print cloth nappies, had long curls and an amber necklace, communicated with animals long before he did with us and spoke in a series of meows. He also climbed everything, danced like a hippie and liked to chew chicken off the bone. He's one of four autistic children and the only one with that nickname. See where I'm going?
There was one aspect I simply cannot apologise for or put across in a less controversial manner: a shared diagnosis is not solely enough to form a friendship with, in most cases. The people I've formed friendships with, online and in real life, are all incredibly unique individuals; some with a similar mindset to my own, many others with differing opinions and beliefs. Some share one or two interests with me, some are friends through circumstance, proximity and experience. They're a beautiful mix of neurodiversity; some deemed typical, some diagnosed ASD, some with other conditions or a mix of many. Some extroverted, some introverted; some a mix of both depending on the day. Some politically minded, some absorbed in nature and deeply spiritual, some who paint their feelings and some who bury them. It's my own expectations here that are the issue; I expected to feel at home and less bizarre. Instead I discovered that I'm simply different no matter what community I'm a part of. That's hardly the community's fault, but it's my experience nonetheless.
Finally, I'd like to encourage feedback of all kind; constructive criticism is always welcomed over criticism alone but I will never silence a commenter unless the comment contains explicit or vulgar content. Transparency and freedom of thought is paramount, in my personal view; this blog is a sum of experiences and I welcome all contributions, regardless of whether we agree on the topic at hand. Thank you as ever to my readers and I apologise if I caused you any personal distress with my poor wording.
