What is Autism?
It’s a social processing condition.
It’s a different way of processing sensory information.
It’s a different way of interfacing with the world.
What isn’t autism?
Autism isn’t a learning disability.
Autism doesn’t mean a low or high IQ.
Autism isn’t a behavioural problem.
Autism isn’t a person trapped inside a mental cage.
Autism isn’t a lack of empathy.
Fundamentally, autism isn’t the enemy.
When you hear about the poor child suffering from autism, you’re hearing a perpetuation of a misleading and hurtful narrative.
We don’t call neurotypical people high-functioning or low-functioning. We don’t look at their intelligence and use it as an indication of how well they are. We don’t assume intelligent equals fine, and unintelligent equals problematic. We look at the whole person.
Autistic people are no less whole. We are no less complicated. If you wouldn’t categorise the majority of the population as high or low functioning, then you can’t caregorise us in that way either. It doesn’t work.
Autism is a normal neurological variance. Some people are left handed, this is a normal neurological variation. Some people are double-jointed, this is a normal physical variation. Some people have green eyes, this is a normal physical variation.
Society seems to be stuck in the throes of panic about the sudden appearance of this normal neurological variation.
“Where has it come from?!” We cry, “Why is it here?! How do we stop it?!”
It’s not new. That’s the first answer. Those of us whose autism came with an average IQ, just carried on as best we could. We were the quiet child who liked reading and didn’t socialise much. Or we were the party animals who always had a drink in hand to override the processing issues.
Those of us who had below average IQs, who couldn’t hide, were hidden for us. They were institutionalised. Locked away. Their families were told to forget about them and move on with their lives.
I do wonder, if we could magically find every autistic brain in the world, we’d find that autistic IQs were largely representative of neurotypical ones. That we have as many geniuses and average people as everyone else. That there isn’t necessarily a link between braintype and intelligence. That instead the link is between visibility and the ability to create our own coping mechanisms.
Those autistics who are unable or unwilling to mask because it is hard work and goes against our own drives, will always be the most visible. And possibly the most happy and true to themselves given the right environment.
This week the autistic community coined a new term: Autistic-Ninja. An autistic person who has learned enough social rules to mask well enough to pass for normal when they choose to.
It was coined whilst discussing the idea that perhaps adult, autistic women who are seen to be coping, should not be given a diagnosis.
We were discussing it, as a group of adult autistic women. There was complete consensus (and given that we are all very different people, with only a neurological-type in common, this can be a rarity!). How do they know that she’s coping? How can someone see what it is that she needs and make that decision for her?
We were discussing this exert.
Habbe has since tweeted that the intention was to leave the choice up to the autistic woman. Which is great.
But of course the choice lies with the individual. She’s either seeking answers and help, or is out getting on with her life unaware of any issues. Coping means coping. It means there are no major issues that would lead to seeking help in the first place.
How would that work in practice? Would she be denied the answer or lied to? That’s where the ethical question comes into place. That and the statement demonstrating a perpetuation of the stigma of autism.
Autism isn’t a stigma. It’s not a puzzle piece. It’s not any one behaviour. It’s simply a way of seeing the world.
I would love to spend a day as a neurotypical, but probably not longer than that. Autism gives my world such colour. It connects everything with everything else. It is patterns and interconnectivity.
Sometimes I wonder if the reason neurotypicals spend so much time seeking human contact, is that they don’t feel connected to the world in the same way that I do. They don’t see the patterns we all make as we clumsily bumble through life together.
It wasn’t so long ago that left-handed people were forced to write with their right hand. Now it’s an accepted difference. Left-handed scissors were created so that they weren’t disabled when it came to cutting things up. It now seems really wrong to force someone to do something that doesn’t come naturally to them, just because that’s how the majority are built.
Doesn’t it?
Autism and Expectations 
Would define myself as an autistic-ninja woman. Professionals always have to over complicate things, especially mental health services, labelling me as ‘complex’ because of my autism. Well I’m only complex because they choose to define me in that way! Diagnosis is great if it helps somebody understand themselves & give meaning to a feeling of being different but as soon as it becomes about stigmatising & finding problems where they don’t really exist you are better off without it. My diagnosis is personal to me & helpful for my own understanding. I rarely share the information at work, hobbies etc.
LikeLiked by 2 people
Absolutely. Decide autistic people are ‘complex enigmas’ and that’s what you’ll find. Decide it’s a negative to diagnose someone with it, and it becomes a negative diagnosis. Rather than a useful fact for someone to help them understand themselves.
LikeLiked by 1 person
I got “complex and interesting” 😀 Not sure if insult or compliment…
LikeLiked by 2 people
I’d take that as a compliment.
I got “enigmatic”.
LikeLiked by 1 person
A NT called me “a stubborn bit of an ar**” while a fellow ND called me a “wonderful mind”…
Bit of a difference, innit? 🙂
LikeLiked by 2 people
I like to always think I’m both those things 😄
LikeLiked by 1 person
Good point, love the thought 🙂
LikeLike
I wonder if people think of autism as a terrible affliction because much of the media focuses on worst-case scenarios–such as young children who cannot speak and suffer from frequent tantrums. I also think it doesn’t help that we classify “higher-functioning” autistics as having Asperger’s Syndrome. Autism is a spectrum, so we should treat it as such, rather than minimizing one person’s experience or championing another’s. Just my two cents.
LikeLiked by 2 people
I agree completely. The media only ever seem interested in savants and “victims”. It’s no wonder that people are so scared. Then you’ve got your fearmongerers hoping to make money out of fake cures.
Meanwhile the vast majority of us are just quietly getting on with life as best we can.
I guess reality isn’t as interesting in our post-fact world.
LikeLike
Reblogged this on Under Your Radar and commented:
Such a wonderful, wonderful post. It says so much so elegantly. Nicely done! Gold star… for days =:-D
LikeLiked by 1 person
Thanks! Felt a bit odd talking about our group conversation, but really wanted to say something about what autism means to us all.
LikeLiked by 1 person
Well, it’s all public on Twitter, so it’s open season, from my perspective. Plus, it was a such a “hot” topic, surely there are others who can relate.
LikeLiked by 1 person
Kudos to AspieMermaid for coining the term! And thank you so much for posting this. Happe tellingly never addressed the implication of her caution around “being seen in that way”, merely deflected the discussion to make it seem friendlier to us. It’s this sort of research, this sort of partial willingness to address fundamental issues which really needs to change. What they say, what they imply about us… that matters. Especially as they’re getting the funding and the attention for their research.
On the other hand, we’ve got folks like Sarah Bargiela, Robyn Steward, and Will Mandy producing excellent research like this: http://link.springer.com/article/10.1007/s10803-016-2872-8?wt_mc=Internal.Event.1.SEM.ArticleAuthorOnlineFirst (free for all to read), which shows sensitivity to our situation, as well as a willingness to get past the standard-issue fear-mongering that drives so much fund-raising.
It’s unfortunate that the ignorance persists, especially at the hands of researchers and experts, but the times they are a-changin’, and we have a lot of progress to look forward to.
Thanks again for writing this – every little bit helps!
LikeLiked by 1 person
I’m optimistic for the future. As you say, the times they are a-changing. There’s no doubt.
The more research out there, the more we are listened to, the better.
Thank you for sharing that research 🙂
LikeLiked by 1 person
Totally agree. We don’t need to change autism, we just need to change the level of understanding of what it means to be autistic, and make sure that support is given where it is needed.
LikeLiked by 2 people
Perfect 😊
LikeLiked by 1 person
Hey Rhi, excellent post 🙂
Please allow me nevertheless to point out that, regardless of how obviously valid is the point the NDs are some neurological variation, for the moment, after I’ve suffered for over half a century the rejection of the NT world, the term “normal” raises the hair on my back (a Transylvanian saying :-))
I just came to understand, accept and embrace my neuro-divergence, feeling for the FIRST time in my life, truly myself, with an acceptable and honest reason behind my uniqueness, anywhere between genial moments and embarrassing meltdowns (had another one due to sensory overload just a couple of hours ago).
For the moment, I don’t want to be “normal” not even for the indulgently long “one hour” you’ve mentioned 😉
And if the NT world would have a problem with me sucking my thumb (even though I don’t) at least I’ll have a valid reason to justify why I may use the “mother and child” parking spots when I go shopping :-):-)
As a matter of fact, my wife candidly asked the other day: “aren’t you the next step in human evolution/development?”
Well interesting enough, just a couple of hours before she asked, I was wondering about EXACTLY the same thing!
And no, we weren’t discussing anything related, at all!
“To infinity and beyond!”
Any comment?
;-);-):-)
LikeLiked by 1 person
Fair point about the word normal. It’s an awful word of itself. Boring and meaning nothing!
I’m so glad you truly feel yourself 😊 this makes me smile.
It’s a nice idea that we’re the next step in human evolution. Somehow I suspect that the truth is that we’ve always been here, seeing things from a different angle, pushing invention and art and beauty. I wonder what humanity would be without us as a part of it. Something tells me, a lot less interesting! Love that you both had the same thought at the same time.
LikeLiked by 1 person
Just as a matter of fact 🙂 people who know me have gotten used to my way of saying “Hi” when I enter a room: “Greetings, amazing people of Planet Earth”:-)
And been doing this for long before realising I’m ND.
So it’s either that we’re the next step in human development (although always here, watching over the process 🙂 as you rightly established) or we’re from a different planet (that’s what I have rather secretly suspected all along…)
LikeLike
I was very moved by this post, especially this- “Sometimes I wonder if the reason neurotypicals spend so much time seeking human contact, is that they don’t feel connected to the world in the same way that I do”. So beautiful so profound. Thanks.
LikeLiked by 1 person
You are very welcome.
LikeLike
I guess I am a bit confused.I am having difficulty getting the thoughts out of my head. I know what I want to say but am struggling OK here goes Just because I have learned ways to adapt doesnt mean I have learned how to cope. It is misleading to assume autism doesnt interfere in my daily function just because over time I have learned ways to modify my enviroment.Autism is a disability in my life.Yes I appear functional but that is just what it is an appearance. I dont know if I am even making any sense right now Sorry
LikeLiked by 2 people
That makes perfect sense. There are lots of ways, every day, that I do extra things to get by. Coping mechanisms that help with sensory overload, stimming, all sorts of things.
In a world of constant communication and phones and lists and noise and lights, it can be a real struggle.
I believe that there are many small changes that the world could make, that would help us. Like the UK Supermarket, ASDA, recently having a quiet hour for shoppers with sensory issues. Everyone loved it, so more stores are planning on doing it.
Having autism is a different challenge to being neurotypical. The world is set up for the neurotypical brain, not for ours. This makes things harder for us. That doesn’t mean that things can’t change. It doesn’t mean that we can’t have a set up that helps everybody.
I don’t see autism as the disability, I see society as it is as disabling. Which means that the more acceptance there is, the more our issues are taken seriously, the less disabled we will be.
I’ve rambled. I hope it makes some sense 🙂
LikeLiked by 1 person
I just wanted to add that I am definitely not saying that autistic people don’t have genuine and real difficulties. Not at all.
LikeLiked by 1 person
You make plenty of sense to me. For me, autism IS disabling. I think how the media portrays autism as being a nightmare for some autistics becomes, for the NT and otherwise uninformed world, as “nightmare for all autistics.” The lack of affordable and varied services and supports are the nightmare. Blessedly, I have had some USEFUL (as opposed to ABUSIVE) level of support over the past 10 years and have learned to manage and be functional to a small degree. I cannot independently support myself and will rely on life-long supports in spite of my 110 I.Q. (tested 2x)-not bragging, but balancing. This throws people, including mental health professionals as they associate level of impairment with I.Q. as if they always go hand-in-hand.
LikeLiked by 2 people
This is why I didn’t put “Autism is disabling” under things it is or isn’t.
There are times I have been completely disabled by shut downs. There are certainly things I now recognise that I can’t do because the cost is too much. I’ve changed my entire life so that it suits who I am, because I can’t force myself to fit with it.
There is a very wrong belief that IQ equals “coping” and it’s so frustrating to hear it over and over again.
I’m so glad you were able to access genuine support that made a difference.
LikeLiked by 1 person
Thank you for responding. Yes, I’ve heard the “Your too smart to act so stupid!” a judge once used these exact words towards me. She also reduced my charges-all meltdown related. I just wanted to slap people who thought meltdowns were only acceptable when someone with a lower IQ had them.
My only concern with the word disability, is that insurance companies like Medicare and Medicaid (at least in Illinois, USA) won’t cover basic services like psych visits and medication unless there is a DSM code given by a psychiatrist. Autism isn’t even covered, but the co-morbids are: Generalized Anxiety Disorder, Obsessive-Compulsive Disorder. Autism isn’t even taken as credible all by itself.
I want autism services to be covered, and my fear (perhaps unfounded?) is that if the word disability is downplayed, that I might lose services down the road, if my comorbids weren’t taken seriously.
LikeLike
That must be so frustrating. Ridiculous that Autism isn’t recognised at all.
Meltdowns are so misunderstood. They’re not tantrums, they’re not controllable.
I completely understand why you are so cautious about disability being downplayed. For me I think it’s down to personal choice for the individual as to how they describe themselves. But lots of people don’t want to use it, not because it’s not accurate, but because it’s seen as a negative label.
I can only see this as a neurotypical thing. For me a label is descriptive, it’s not a value judgement. When I say I’m autistic, it’s just what I am, it’s not good or bad, it just is. Same with disability. It’s a descriptive term for no being able to do something that other people can do as standard. But some see it as “giving in” to be factual like that. Which puts people off from using it. It’s a vicious cycle.
I really hope you manage to get the support you need. I always appreciate your comments.
Rhi
LikeLike
Have you looked at my pagel?It’s achildlikemewordpress.com I have to have autism it makes perfect sense but my life mistakes are what everyone sees.
LikeLiked by 2 people
I’ve just had a look and my heart goes out to you. Can I ask if you’re still spending a lot of energy pretending to be neurotypical? It’s so exhausting doing that everyday.
I have to try to make time for downtime. Which can be really hard when you have kids. But having maybe half an hour in a dark, quiet room to let your head untangle itself can really help.
People need to understand that being autistic means that eye contact hurts. It’s genuinely hard. Just forcing yourself to do that wastes so much energy.
If you told a neurotypical that they had to pretend to be autistic all day every day, then you can bet they would be absolutely exhausted and feel awful.
LikeLike
I am unsure what you mean about pretending to be neurotypical? What does that mean?Do I ever explain myself citing autism as the reason for any personality deficts I might have?Do I ever tell anyone Hey I am over stimulated and about to go into sensory overload?No I am seen as unstable mentally ill person.I was told by a friend of mine that sometimes I make it really hard for her to remain friends with me.I have been told more than once I am the coldest person to date I dont like to be hugged and dont like giving hugs I tune out conversations which leads others to believe I dont care.It isnt that I dont care its that I DONT KNOW WHAT TO SAY or the conversation isnt being processed because my brain is frazzled or because I am getting ready to shut down My brother spent a few weeks with me and my children a few years ago and he said the most interesting thing He said you know what?Everyday between the hours of three and five you are havin a fit just like a baby who is colicky. He told me its like clockwork everday its the same pattern of behavior and it doesnt matter if I was having the best day of my life…my brother said the best thing to do is to leave me alone he would hide in the basement lol I guess this is what is known as a melt down.Would I ever say to my brother hey my colicky time is actually called a melt down I have autism. Maybe my little brother I would tell because it would make sense to him but the rest of the world would laugh at me.I dont fit the picture of someone with autism. My life has had too many other things that have happend to me and any struggles I have I must have brought them on myself.Its my fault I am like this and if I dont like it then change.
LikeLike
It sounds to me like you’ve coped incredibly for a ridiculously long time without the support or understanding you need.
So I’m going to start by pointing out how incredibly strong that makes you. Incredibly strong. I know you won’t feel it, but you are.
When I say pretending to be neurotypical, I mean trying to do all the things everyone else does; making small talk, forcing yourself to do eyecontact, not stimming when you need to, trying to stay still etc.
Being told that the natural way you are is cold or difficult, when you’re neither of those things, you’re just not showing them in a neurotypical way, is always going to hurt. So many autistic people get multiple mental health diagnoses. Particularly those who weren’t diagnosed, because they’re comparing themselves to everyone else, and it’s not the same.
It sounds like your brother knows you well and cares about you. You don’t ever need to tell the whole world, but you do need to know that you are not cold because you don’t like hugging. They are wrong. They’re judging you by the wrong standards.
LikeLike
I commented on a post about girls being overlooked who are in the spectrum I kinda lost myself while I was writing I remember being very small and being in a closet. I liked it in there it was cozy and quiet and I can still smell the sweet smell of spring and summer in that closet. I must of been around 8yrs old when that closet and the its memories disappeared….until the other night and it makes scense to me now why at the age of 22 I was sitting in a closet thinking I was loosing my mind because I liked it in there I admit I was having some sort of total melt down or mental breakdown I called a suicide hotline and told the lady I was sitting in the closet and didnt wanr to come out I just wanted to be left alone I craved the solitude and the silence the closet offered The lady did ofcourse want me to check into a hospital. Was she joking?Picture a small closet. Now picture a hospital. I was having trouble picturing myself leaving the closet and going into the living room.No way in hell was I going to a hospital! So I guess my question to you is do you think the closet was autism related or am I just crazy?
LikeLike
Autism related. Being in an enclosed space, in the dark and the quiet with a smell you like, is being somewhere your senses can stop being in overdrive.
There are many times I look back at now and finally understand why I behaved in a certain way. At the time I thought I was crazy because no one else behaved in that way, but actually so many autistic people did.
You were using a coping mechanism for sensory overload that you created for yourself. Not crazy at all.
LikeLike
I have a difficult time believing I have autism because of the dysfunction of my life once I turned 12 I no longer lived at my grammas I moved into a very disturbing world of drugs thieves abuse and constant chaos How could a person with autism cope in that kind of envioroment? Twelve years old was the worst year of my life until the year I was 17 and I was thrown into another world of misery and depression I started using drugs that year I used drugs to escape into my own little world
LikeLike
It sounds like drugs may well have been a form of you trying to find a way to cope. There have been links suggested between alcoholism and autism. Because it shuts down your processing and sensory problems.
Obviously it then causes its own issues.
It could be that you also have post traumatic stress issues too.
Look at everything you have been through. Look at what you have survived. You cannot tell me that any twelve year old caused her own problems. You did not have the upbringing that you needed. That wasn’t your fault. It really wasn’t. You deserve understanding as much as anyone.
LikeLike
I definetly have post truamatic stress issues,but not from my childhood. My brother and sister lived in an enviroment their entire life filled with abuse and neglect and did not have the luxury of living at grammas like I did. And they both work,they have both been in a relationship for years,they function better than I do. I went to college am one credit from earning a B.A. in criminal justice The corse I needed was phy ed. I was told over and over what I needed to do but it was too many steps and people and departments I gave up. It didnt matter how many times my advisor told me what to do;I needed someone to physically show me how to get that credit and how to graduate.So here I sit with more oppurtunities than my brother and sister ever had and havent ever worked longer than 90days and any romantic relationship is over before it really begins.I know I have autism but need more than a test to prove it. It is very hard to find professional people to diagnois adults.Do you have any suggestions?
LikeLike
I know that there are a couple of people who help through online services. I’m not sure how much it costs, but they offer various support options too.
If you google Sarah Hendrickx in the UK, and Tania Marshall in Australia. I’m pretty sure both will do Skype sessions so that location isn’t important.
It sounds like you have problems with Executive Function. Really common in people with autism.
LikeLike
will you describe Executive Function? Please
LikeLike
https://musingsofanaspie.com/executive-function-series/ there’s a good blog about it hwrw
LikeLike
WRT the assumption that autism is a learning disability, here’s something that happened to me – I was at a conference thingy in London and during a presentation someone said something along the lines of “a learning disability like Down’s syndrome or autism”. So, being me, I blurted out that autism is a developmental disability rather than a learning disability (but didn’t really go into whether Down’s syndrome is a learning disability – as far as I know it isn’t in and if itself itself considered a learning disability, but a genetic condition, and one of the characteristics of Down’s syndrome is some degree of learning disability, along with several other aspects of the syndrome).
Chatting with the woman afterwards, she apologised (don’t understand why she thought she needed to apologise, but okay) and said I must find it frustrating/upsetting when people thought I had a learning disability as I was clearly intelligent
So either she thinks there’s something wrong with having a learning disability, or she thinks that I think that. Argh.
LikeLike
I’m both a leftie and autistic. Thank you for telling it like it is.
LikeLike
Well if i think hard i can categorize the majority of neurotypicals into low functioning 🙂 As i read and read i’ve come to the realization the the category like neurotypical just enables people to look down on autistic ones, and that alone means that they are low functioning. we rarely use our iq and capacities to actually do some good, we use it to judge and categorize others instead.
LikeLiked by 1 person
Interesting perspective 😊 it’s all so… Arbitrary, isn’t it? How do you even begin to define low or high functioning? How do you measure the value or happiness of a person?
You’re probably right, most people don’t function on anything but a basic level, and that’s ok. It’s only used to measure people who think differently.
LikeLiked by 1 person